I confess...this isn't going to be a long post, I just don't have much in me, but I want to "talk" about depression.
I think people too easily confusion being depressed with being unhappy. This distinction was on my mind today since I had a follow-up appointment with my general practitioner. I'd gone off my antidepressant at the start of the year, a process that was pretty excrutiating. As I dealt with the withdrawal, I cursed the idea of antidepressants.
But then, I got depressed. I felt this big dark cloak over me. I was Eeyore with the gray rain cloud obscuring everything. I simply felt dark and couldn't imagine any light. Nothing made me smile. I sucked it up and went back to the doctor. I started on a new medicine and had a follow-up today after about six weeks. The difference is night-and-day. The medicine banished the black cloak. I've realized that true depression can be akin to diabetes. A diabetic needs insulin, I might need an antidepressant.
Of course, I've been pretty vocal about the fact that I'm in a LOT of pain. Obviously, this doesn't make for a happy Rambler. I am angry, I am tired, I am frustrated, I am prone to tears. But, still, it is a compeltely different feeling that the depression. No one would be chipper if they went from active and walking six miles a day to bed-ridden and struggling to even sit upright for more than a few minutes.
Lesson/Point -- Depression is a medical illness and should be treated as such. Someone who is depressed cannot be expected to just "snap out of it" and depression is not a reflection on the overall state of a person's life. You can have it all and still be depressed. And you can have your depression under control and still be struggling emotionally. Make sure your treatment matches your condition. I'm treating the depression with medicine and I am working on my current emotional state by trying to get answers on the pain since that's the culprit...THE PAIN is the problem now and that's what I need help with, not my mood.
Tuesday, March 27, 2012
Monday, March 26, 2012
Endo Month Week Four -- Coping
I confess....it feels a bit weird to tackle this week's topic for Endo Awareness month. The topic is coping strategies. While it is my back issues, not my endo, that's the culprit right now, I'm not coping well. I went out with the MM for a bit today and tried to put on my "people face" but within a short time I was ready to be back in bed. I'm pinning a lot of hopes on the pain specialist appointment.
Anyway, I do have thoughts on coping with endo. There's no cure for endo but using hormonal birth control can help. I'll refrain from going off too far on a tangent about the debates about covering birth control pills, but, for me, the pill is essential to making it possible to live with endo. I take the pill continuosly, tossing the week of placebo pills that a normal user would take the fourth week at which point a woman would get her period (side note: a period on the pill is totally different from a "real" period...it isn't any more natural to have a pill-induced period than to skip it). Some pills are now marketed to help women avoid their periods as a lifestyle choice but I use a standard pill and just go through a pack in three weeks instead of four. This keeps my body in a steadier state. If I miss even one day, I get a severe uptick in pain. Getting the prescription written right is important for getting insurance to cover the quicker rate of use.
A few other things that help when the pain ticks up:
EDITING TO ADD a teddy bear -- Maybe it's silly, but sometimes having something to squeeze always helps me when I'm in pain. I even brought my teddy bear with me to my back surgery and gave major props to the nurse who ensured he was on my bed when I woke up in recovery.
Anyway, I do have thoughts on coping with endo. There's no cure for endo but using hormonal birth control can help. I'll refrain from going off too far on a tangent about the debates about covering birth control pills, but, for me, the pill is essential to making it possible to live with endo. I take the pill continuosly, tossing the week of placebo pills that a normal user would take the fourth week at which point a woman would get her period (side note: a period on the pill is totally different from a "real" period...it isn't any more natural to have a pill-induced period than to skip it). Some pills are now marketed to help women avoid their periods as a lifestyle choice but I use a standard pill and just go through a pack in three weeks instead of four. This keeps my body in a steadier state. If I miss even one day, I get a severe uptick in pain. Getting the prescription written right is important for getting insurance to cover the quicker rate of use.
A few other things that help when the pain ticks up:
- Heating pads -- I've got one that is microwavable and has a belt attached which is handy.
- Pain patches -- I don't like the bulk of Thermacare patches but actually have used BenGay-like patches in the pelvic region. Honestly, I think they just serve as a bit of a distraction...it is a feeling other than the pain.
- The fetal position -- Curling up seems to provide actual relief in addition to being a bit emotionally/mentally comforting.
- Breathing exercises -- I think some degree of instinct led me to use Lamaze-like breathing exercises. I don't have formal training in it so it's kind of a tv version of labor breathing but it actually provides some relief. I think it is also distracting.
- Medicine -- OTC stuff does nothing for me, but sometimes I've needed strong pain pills in order to get through a bad spell.
- Endo sisters -- Having connections with other women on the same journey is extremely helpful. The internet is definitely a great resource in finding "sisters" who truly understand what it is like to battle this disease.
EDITING TO ADD a teddy bear -- Maybe it's silly, but sometimes having something to squeeze always helps me when I'm in pain. I even brought my teddy bear with me to my back surgery and gave major props to the nurse who ensured he was on my bed when I woke up in recovery.
Saturday, March 24, 2012
An Airplane Read: The Secret Life of Cee Cee Wilkes (Chamberlain)
I confess....I did not take it well when the only suggestion the doctor made was "try ice." I've gone from walking six miles a day to being all but bed-ridden. I need more constructive help that ice.
Anyway....this book is the monthly book club pick over at Julie's website, Peanut Butter Fingers (insert little trademark symbol here, congrats Julie!). It would be a weird fit with my next book and I'm not sure I'll finish that in time so it gets its own review post.
I sat at a three and a half stars through most of this book. It held my attention and was an enjoyable read but I wasn't overly wrapped up in it....I didn't look forward to reading it each night but I wasn't anxious for it to be over either. Most of the book focuses on Eve as she builds a life with her past a secret to everyone. Eve interested me and she showed a lot of growth from the teenager she'd been. The last third focused on her daughter and that's where the book dropped off for me. I didn't like Corrine, which isn't always a deal-breaker for me but became one since she simply didn't ring true to me. I didn't believe in her phobias, her falling out with her family (evident from the preview so not a spoiler), or her relationship with her boyfriend. It took the book down to three stars.
This might be a decent airplane book....it passed the time and held my interest but didn't command my full, undivided attention and I'd have no problem putting it away if the plane landed mid-chapter.
Anyway....this book is the monthly book club pick over at Julie's website, Peanut Butter Fingers (insert little trademark symbol here, congrats Julie!). It would be a weird fit with my next book and I'm not sure I'll finish that in time so it gets its own review post.
- The Secret Life of Cee Cee Wilkes by Diane Chamberlain
I sat at a three and a half stars through most of this book. It held my attention and was an enjoyable read but I wasn't overly wrapped up in it....I didn't look forward to reading it each night but I wasn't anxious for it to be over either. Most of the book focuses on Eve as she builds a life with her past a secret to everyone. Eve interested me and she showed a lot of growth from the teenager she'd been. The last third focused on her daughter and that's where the book dropped off for me. I didn't like Corrine, which isn't always a deal-breaker for me but became one since she simply didn't ring true to me. I didn't believe in her phobias, her falling out with her family (evident from the preview so not a spoiler), or her relationship with her boyfriend. It took the book down to three stars.
This might be a decent airplane book....it passed the time and held my interest but didn't command my full, undivided attention and I'd have no problem putting it away if the plane landed mid-chapter.
Thursday, March 22, 2012
where i'm at
I confess....you should skip this post if you have a low whining threshold 'cause the only honest update I can give is pretty negative.
I've dealt with chronic pain for years but thi is by far the highest level of unrelenting pain that I've faced. I've taken to my bed for an evening, but this has had me all but bed-ridden for the better part of a month. When I sit, it feels like I have a pole jammed up into my spine and the pain is often at an 8 on the 1-10 scale. Staying in bed doesn't eliminate the pain, but it is lower. Today even lying still gives me pain around a 6....which is hard to tolerate for a long term.
I've tried to walk a bit but even I know I can't do my usual six miles. It's bad enough pain that I don't even feel guilty not doing my whole workout, which say a LOT. The pain level when I walk is between the degree I have sitting and the amount in bed but I get horrid rebound pain a few hours later. I'm also DRENCHED after even a mile which I think is a sign my body is working a lot harder than normal.
On that note, the stress of pain is an issue in itself. When I saw the sleep doc, my blood pressure was normal but the nurse clocked my pulse rate at 100bpm. It always runs high but not usually THAT high. The other night when I tried to sit through a full hour show, I felt like my heart was beating through my chest. I counted and got a whopping 120bpm. All I was doing was sitting on the couch. Dr Dad confirmed that it is likely stress (and that I didn't need to run to the ER).
No word yet on the MRI, but there's also so much they don't show. I'm wondering if the cages in my back are pressing on something. I know from the endo that the smallest thing can cause intense pain if it hits the wrong nerve. A friend in a support group I used post-op also mentioned a hardware slip, anther one mentioned SI joint issues. The pain is definitely localized and it isn't radiating at all (which it did pre-op). I get sore/stiff in the rest of my spine but my former-gym-rat-self can tell it is just secondary pain. It is very much my low back, frankly right above my butt, that's the issue. It isn't a stabbing, more like the knife is already there and it is being twisted or, like I mentioned earlier, like I'm sitting on a pole.
I'm finally down to only one week until the pain management doc. I'm aware that I won't walk away cured. I know they don't like to just prescribe meds and I agree that it needs a more direct treatment which would probably take another appointment to do. I need to feel the hope of a plan though. I missed out on a gorgeous weekend (I pushed and sat outside a bit....and paid for it later) and I know I'm driving MM a bit nuts but I can't think much beyond the pain. The days feel so long...I'm taking medicine to help my sleep (with a specialist's blessing) and I honestly look forward to going to sleep from the moment I wake up.
I've dealt with chronic pain for years but thi is by far the highest level of unrelenting pain that I've faced. I've taken to my bed for an evening, but this has had me all but bed-ridden for the better part of a month. When I sit, it feels like I have a pole jammed up into my spine and the pain is often at an 8 on the 1-10 scale. Staying in bed doesn't eliminate the pain, but it is lower. Today even lying still gives me pain around a 6....which is hard to tolerate for a long term.
I've tried to walk a bit but even I know I can't do my usual six miles. It's bad enough pain that I don't even feel guilty not doing my whole workout, which say a LOT. The pain level when I walk is between the degree I have sitting and the amount in bed but I get horrid rebound pain a few hours later. I'm also DRENCHED after even a mile which I think is a sign my body is working a lot harder than normal.
On that note, the stress of pain is an issue in itself. When I saw the sleep doc, my blood pressure was normal but the nurse clocked my pulse rate at 100bpm. It always runs high but not usually THAT high. The other night when I tried to sit through a full hour show, I felt like my heart was beating through my chest. I counted and got a whopping 120bpm. All I was doing was sitting on the couch. Dr Dad confirmed that it is likely stress (and that I didn't need to run to the ER).
No word yet on the MRI, but there's also so much they don't show. I'm wondering if the cages in my back are pressing on something. I know from the endo that the smallest thing can cause intense pain if it hits the wrong nerve. A friend in a support group I used post-op also mentioned a hardware slip, anther one mentioned SI joint issues. The pain is definitely localized and it isn't radiating at all (which it did pre-op). I get sore/stiff in the rest of my spine but my former-gym-rat-self can tell it is just secondary pain. It is very much my low back, frankly right above my butt, that's the issue. It isn't a stabbing, more like the knife is already there and it is being twisted or, like I mentioned earlier, like I'm sitting on a pole.
I'm finally down to only one week until the pain management doc. I'm aware that I won't walk away cured. I know they don't like to just prescribe meds and I agree that it needs a more direct treatment which would probably take another appointment to do. I need to feel the hope of a plan though. I missed out on a gorgeous weekend (I pushed and sat outside a bit....and paid for it later) and I know I'm driving MM a bit nuts but I can't think much beyond the pain. The days feel so long...I'm taking medicine to help my sleep (with a specialist's blessing) and I honestly look forward to going to sleep from the moment I wake up.
Monday, March 19, 2012
Endo Awareness Week 3 -- Fertility
I confess....the back pain's "winning". Part of me hopes the MRI on Monday is clear but part of me hopes they see something so I can get some plan for relief. I tried to spend a few hours out of bed on Saturday to enjoy the lovely day....I'm writing this on Sunday, back in bed where even staying still isn't providing much relief.
This week's Endo Month topic is fertility. I debated skipping this week since I don't have personal experience in this area but I want to continue to be a part of the informational effort of this blog group and to support other women who struggle with this disease. Endo is a tricky beast, in part because it can manifest itself in many ways. For me, it is largely about pain and it is the pain that led to my diagnosis. For other women, they don't suffer from pain and only find out they have the disease when they have difficulty conceiving. For many, it is a dual blow of physical pain and the emotional struggle with fertility.
Endo is one of the leading causes of infertility but not every woman with endometriosis will struggle with their fertlity. My doctors believe that the nature of my endo growths are such that they should not interfere should I ever want to try to conceive. That said, the pain itself presents a fertility challenge. I manage my endo by taking continuous hormonal birth control. Missing even a single dose pretty much guarantees me a couple of days that mark very high on the pain scale. Obviously, trying to conceive would mean going off the hormones. That's a scary thought. And pelvic pain doesn't exactly make the prospect of, well...the acts needed to make a baby...all that appealing.
I've been a part of several support communities and watched so many women struggle to fulfill a dream of motherhood. For some, that dream is a long haul of medical procedures. For others, it is the legal complexity of adoption because endo has robbed them of the opportunity to carry their own child. It is maddening that with all our medical knowledge, endo makes motherhood so difficult for so many good women who have so much to give. Although my own struggle has not been the same, my heart goes out to every "Endo Sister" who has fought the fertility-challenging (or robbing) aspect of this disease. May all of you find your path to motherhood and may science advance so that future women don't share your struggle.
This week's Endo Month topic is fertility. I debated skipping this week since I don't have personal experience in this area but I want to continue to be a part of the informational effort of this blog group and to support other women who struggle with this disease. Endo is a tricky beast, in part because it can manifest itself in many ways. For me, it is largely about pain and it is the pain that led to my diagnosis. For other women, they don't suffer from pain and only find out they have the disease when they have difficulty conceiving. For many, it is a dual blow of physical pain and the emotional struggle with fertility.
Endo is one of the leading causes of infertility but not every woman with endometriosis will struggle with their fertlity. My doctors believe that the nature of my endo growths are such that they should not interfere should I ever want to try to conceive. That said, the pain itself presents a fertility challenge. I manage my endo by taking continuous hormonal birth control. Missing even a single dose pretty much guarantees me a couple of days that mark very high on the pain scale. Obviously, trying to conceive would mean going off the hormones. That's a scary thought. And pelvic pain doesn't exactly make the prospect of, well...the acts needed to make a baby...all that appealing.
I've been a part of several support communities and watched so many women struggle to fulfill a dream of motherhood. For some, that dream is a long haul of medical procedures. For others, it is the legal complexity of adoption because endo has robbed them of the opportunity to carry their own child. It is maddening that with all our medical knowledge, endo makes motherhood so difficult for so many good women who have so much to give. Although my own struggle has not been the same, my heart goes out to every "Endo Sister" who has fought the fertility-challenging (or robbing) aspect of this disease. May all of you find your path to motherhood and may science advance so that future women don't share your struggle.
Sunday, March 18, 2012
A Rave, A Miss, and One That's Hard to Classify: The Shoemaker's Wife (Trigiani), Waiting for Sunrise (Boyd), and Heroes for My Daughter (Meltzer)
I confess....I'm trying to write this post outside. It is a struggle to be out of bed but MM is insisting I need to try to enjoy some of the lovely weather. He's right, but it is hard to enjoy the early Spring when it feel like there's a knife in your spine.
These reviews feel like an odd batch...one rave, one that I struggled to finish, and one that's just a bit hard to classify.
The novel opens in the Italian Alps in the late 1800s. Ciro is left, along with his older brother, in the care of a group of nuns when their recently widowed mother feels overwhelmed by the task of parenting amid her grief. In a neighboring village, Enza is growing up as the eldest daughter in a poor but loving family where she assumes a great deal of family responsibility from a very young age. She is heart-broken when her beloved youngest sister dies suddenly but she finds herself quite taken with Ciro when he is hired to help dig the girl's grave. Shortly after their meeting, Ciro is banished from the convent and seeks refuge by fleeing to America. He is unable to tell Enza of his move but they are destined to meet many times more in the wake of Enza's own move to the US where she travels to work and diligently sends money back to her family. Both characters work hard as they try to find success in America while still honoring their roots.
I loved this book and have no doubt it will be re-read more than once. There is a love story, but it is primarily the story of two immigrants struggling to make their way. The stories are vividly written and filled with details that can be both beautiful and heart-wrenching. Enza and Ciro are two of my favorite protagonists in recent memory and I was cheering for them both throughout the read. Their journeys are hard but they both persevere through poverty with strong spirits and the help of both family and friends. The writing is beautiful and Trigiani created a world I loved to visit. A strong 4.5 stars...Enza felt a little too perfect for the full five outright but I'll happily round up.
I feel like I missed something here. I simply did not enjoy Boyd's writing style. It felt very cold and detached and I never developed any involvement into the story. Boyd seems to have many devoted fans but I just can't count myself as one of them. It felt like he threw too much into the book and that detracted from my experience. I was most interested in the psychoanalysis plot line but that compromised a fairly small portion of the story. I found the plot convoluted and I had trouble keeping all the players straight. I seem to be in the minority among early readers, although it may be that other advance copies went to Boyd devotees. For me, two stars.
It is tough to put a rating on this book simply because it isn't a typical style and it doesn't have a typical mission. The writing felt a bit simplistic but I think that's done with reason so don't feel like it should be a source of penalty. I think it could have had some more unfamiliar characters but it is an admirable concept and there are some wonderful profiles included. For the sake of the review sites, I'll mark it at four stars. I think it does a good job of conveying its message, I'm just not the intended audience.
These reviews feel like an odd batch...one rave, one that I struggled to finish, and one that's just a bit hard to classify.
- The Shoemaker's Wife by Adriana Trigiani
The novel opens in the Italian Alps in the late 1800s. Ciro is left, along with his older brother, in the care of a group of nuns when their recently widowed mother feels overwhelmed by the task of parenting amid her grief. In a neighboring village, Enza is growing up as the eldest daughter in a poor but loving family where she assumes a great deal of family responsibility from a very young age. She is heart-broken when her beloved youngest sister dies suddenly but she finds herself quite taken with Ciro when he is hired to help dig the girl's grave. Shortly after their meeting, Ciro is banished from the convent and seeks refuge by fleeing to America. He is unable to tell Enza of his move but they are destined to meet many times more in the wake of Enza's own move to the US where she travels to work and diligently sends money back to her family. Both characters work hard as they try to find success in America while still honoring their roots.
I loved this book and have no doubt it will be re-read more than once. There is a love story, but it is primarily the story of two immigrants struggling to make their way. The stories are vividly written and filled with details that can be both beautiful and heart-wrenching. Enza and Ciro are two of my favorite protagonists in recent memory and I was cheering for them both throughout the read. Their journeys are hard but they both persevere through poverty with strong spirits and the help of both family and friends. The writing is beautiful and Trigiani created a world I loved to visit. A strong 4.5 stars...Enza felt a little too perfect for the full five outright but I'll happily round up.
- Waiting for Sunrise by William Boyd
I feel like I missed something here. I simply did not enjoy Boyd's writing style. It felt very cold and detached and I never developed any involvement into the story. Boyd seems to have many devoted fans but I just can't count myself as one of them. It felt like he threw too much into the book and that detracted from my experience. I was most interested in the psychoanalysis plot line but that compromised a fairly small portion of the story. I found the plot convoluted and I had trouble keeping all the players straight. I seem to be in the minority among early readers, although it may be that other advance copies went to Boyd devotees. For me, two stars.
- Heroes for My Daughter by Brad Meltzer
It is tough to put a rating on this book simply because it isn't a typical style and it doesn't have a typical mission. The writing felt a bit simplistic but I think that's done with reason so don't feel like it should be a source of penalty. I think it could have had some more unfamiliar characters but it is an admirable concept and there are some wonderful profiles included. For the sake of the review sites, I'll mark it at four stars. I think it does a good job of conveying its message, I'm just not the intended audience.
Wednesday, March 14, 2012
praise for a new doctor
I confess....I've talked about doctors before. Between my chronic health problems and the fact that I've moved a good bit as an adult, I've seen a LOT of doctors. So I consider myself something of an expert.
I'd booked an appointment for a sleep specialist a while back. I have never slept well. I honestly didn't know that it was abnormal to need at least an hour from pillow-time to sleep-time until I got to college and had roommates. I'd had escalating trouble in the past few months though, often getting up and reading in the living room around 3AM b/c it was frustrating to lie awake. I often got only an hour or so of sleep for several nights in a row. This would sometimes persist even if I took a prescription sleep aid. In the past couple weeks, I gave in and took Ambien nightly...previously I only allowed myself to take it twice a week but sleep has been the only "break" from my high pain level and I've needed it. I also added an additional medicine to my routine that helps patients cope with pain. The new medicine, the Ambien, and two Tylenol PMs have been working really well but I kept the appointment because I wasn't sure it was a great longterm approach.
Anyway, that's the history that brought my to Dr. A.R.K. It was probably the best experience I EVER had with a doctor. She spent a good 45 minutes with me. She actively listened and asked questions, both her standard ones and questions that followed up on what I said. She expressed concern for my level of pain, noting she'd like to meet me when I didn't look like every muscle in my body was tense. She suggested raising a minor change with my GP that might help take more of the edge off the pain. She praised me for managing to wean off pain meds, noting it was always hard but clearly worse when the pain was still there. She took my overall health into account when making the recommendation that I go ahead and use the "cocktail" that's been working and suggested another change in timing that might help me skip the Tylenol PMs (it did work last night). I was concerned that it wasn't good to take every night but she said it was fine and noted she couldn't fathom not having me do what works so that I at least get the break from the pain when I sleep. She said that she would be happy to work with me over email (she's with Geisinger and they have a good online health mgmt system) to talk about trying to sleep without the medicine but that I shouldn't worry about it until after the pain was under control. She offered to talk standing when she noticed I was propping my weight on my arms/hands to keep the pressure off my low back.
This is rambly. Blame the fact that I'm still in pain.
But I really appreciated the level of true patient care....especially when I feel a bit left to suffer by the neuro (he IS referring me to pain management folks but hasn't offered much help during the wait until I can get in). I remarked to the doctor that I think she spent more time with me in one appointment than I've spent with my surgeon in a year. She noted she'd been a general practitioner previously and that one hires a surgeon for their hands, not their manner. I sent a note to the health system praising the doctor. It was tough to go to the appt since it clearly meant getting out of bed and moving, neither of which has been easy recently, but she made it such a good experience. I want to clone her (and get her to take just one patient as a GP...mine is thorough but not nearly as kind).
Thank you, Dr. A.R.K. You made me feel listened to and cared for and the world would be better if there were more doctors like you.
I'd booked an appointment for a sleep specialist a while back. I have never slept well. I honestly didn't know that it was abnormal to need at least an hour from pillow-time to sleep-time until I got to college and had roommates. I'd had escalating trouble in the past few months though, often getting up and reading in the living room around 3AM b/c it was frustrating to lie awake. I often got only an hour or so of sleep for several nights in a row. This would sometimes persist even if I took a prescription sleep aid. In the past couple weeks, I gave in and took Ambien nightly...previously I only allowed myself to take it twice a week but sleep has been the only "break" from my high pain level and I've needed it. I also added an additional medicine to my routine that helps patients cope with pain. The new medicine, the Ambien, and two Tylenol PMs have been working really well but I kept the appointment because I wasn't sure it was a great longterm approach.
Anyway, that's the history that brought my to Dr. A.R.K. It was probably the best experience I EVER had with a doctor. She spent a good 45 minutes with me. She actively listened and asked questions, both her standard ones and questions that followed up on what I said. She expressed concern for my level of pain, noting she'd like to meet me when I didn't look like every muscle in my body was tense. She suggested raising a minor change with my GP that might help take more of the edge off the pain. She praised me for managing to wean off pain meds, noting it was always hard but clearly worse when the pain was still there. She took my overall health into account when making the recommendation that I go ahead and use the "cocktail" that's been working and suggested another change in timing that might help me skip the Tylenol PMs (it did work last night). I was concerned that it wasn't good to take every night but she said it was fine and noted she couldn't fathom not having me do what works so that I at least get the break from the pain when I sleep. She said that she would be happy to work with me over email (she's with Geisinger and they have a good online health mgmt system) to talk about trying to sleep without the medicine but that I shouldn't worry about it until after the pain was under control. She offered to talk standing when she noticed I was propping my weight on my arms/hands to keep the pressure off my low back.
This is rambly. Blame the fact that I'm still in pain.
But I really appreciated the level of true patient care....especially when I feel a bit left to suffer by the neuro (he IS referring me to pain management folks but hasn't offered much help during the wait until I can get in). I remarked to the doctor that I think she spent more time with me in one appointment than I've spent with my surgeon in a year. She noted she'd been a general practitioner previously and that one hires a surgeon for their hands, not their manner. I sent a note to the health system praising the doctor. It was tough to go to the appt since it clearly meant getting out of bed and moving, neither of which has been easy recently, but she made it such a good experience. I want to clone her (and get her to take just one patient as a GP...mine is thorough but not nearly as kind).
Thank you, Dr. A.R.K. You made me feel listened to and cared for and the world would be better if there were more doctors like you.
Monday, March 12, 2012
Endo Awareness Month: Mental Impact
I confess...I'm not doing much better. Ironically, I have another specialist scheduled for today. I've actually been managing to sleep decently with the help of a the medicine that is supposed to help one deal with the pain, but I still need Ambien or I'm up so kept the Sleep Doc appt.
Anyway, this week's topic for Endo Awareness Month is the mental impact. For me, this is all about how chronic pain impacts me (so a LOT of this applies to chronic back pain too). It is draining. When you are in pain constantly, you are also tired constantly. A deep bone tired that isn't about needing sleep but rather about just being out of energy. I can put on my "people face" when I need to but that takes a LOT from me. I need a lot of downtime. I do love going out to dinner on the weekends but if I've had to put on the people face a lot then I often opt for more quiet nights at home. The pain itself stops me in my tracks and makes me yearn for bed and the weight of the constant pain just adds to that.
The added wrinkle on the mental side comes from the fact that endo is an invisible illness. I remember being in pain on the train once and practically jumping at an open seat only to hear two women deride me, suggesting they were tired and needed it more. I'd sometimes make a phone call and mention that I was in pain in the hopes someone would offer me a seat (I was too shy to ask). I've had people toss out the phrase "well, at least you have your health" and wanted to reach in and squeeze and twist everything below their belly-button and then ask if they wanted to repeat the comment. I've also had people who doubt and question my pain since I look like a pretty healthy person from the outside. I want to scream from the rooftops that you can look healthy and still be crying inside from pain.
A final issue on the mental side is guilt. I have talked before about "ribbon envy"...the jealousy that other diseases get much more attention even though endo impacts so many lives. I get a bit mad when I see so many pink ribbon fundraisers. And then I feel guilty. Of course, I want breast cancer cured. And I know my illness is not a fatal one. I feel guilty about the jealousy, but it is honest. I was once at a winery that sold shirts with a donation to endo and I nearly cried happy tears (they had NO smalls or mediums so I couldn't get one, they weren't sleep-shirt friendly or I'd have bought an XL).
Anyway, this week's topic for Endo Awareness Month is the mental impact. For me, this is all about how chronic pain impacts me (so a LOT of this applies to chronic back pain too). It is draining. When you are in pain constantly, you are also tired constantly. A deep bone tired that isn't about needing sleep but rather about just being out of energy. I can put on my "people face" when I need to but that takes a LOT from me. I need a lot of downtime. I do love going out to dinner on the weekends but if I've had to put on the people face a lot then I often opt for more quiet nights at home. The pain itself stops me in my tracks and makes me yearn for bed and the weight of the constant pain just adds to that.
The added wrinkle on the mental side comes from the fact that endo is an invisible illness. I remember being in pain on the train once and practically jumping at an open seat only to hear two women deride me, suggesting they were tired and needed it more. I'd sometimes make a phone call and mention that I was in pain in the hopes someone would offer me a seat (I was too shy to ask). I've had people toss out the phrase "well, at least you have your health" and wanted to reach in and squeeze and twist everything below their belly-button and then ask if they wanted to repeat the comment. I've also had people who doubt and question my pain since I look like a pretty healthy person from the outside. I want to scream from the rooftops that you can look healthy and still be crying inside from pain.
A final issue on the mental side is guilt. I have talked before about "ribbon envy"...the jealousy that other diseases get much more attention even though endo impacts so many lives. I get a bit mad when I see so many pink ribbon fundraisers. And then I feel guilty. Of course, I want breast cancer cured. And I know my illness is not a fatal one. I feel guilty about the jealousy, but it is honest. I was once at a winery that sold shirts with a donation to endo and I nearly cried happy tears (they had NO smalls or mediums so I couldn't get one, they weren't sleep-shirt friendly or I'd have bought an XL).
Saturday, March 10, 2012
because being bed-ridden entitles me to a whining post
I confess....I am angry. And exhausted. And frustrated.
I'm still spending most of the day in bed, where I've been for the better part of two weeks. If I stay perfectly still, the pain is manageable. But even moving to use the bathroom shoots it back up. I'm stubborn and tried to sit with MM for our nightly Daily Show and Colbert Report reruns (they show the prior night's episodes at 6 and 630) the past couple of nights...it feels like I'm sitting on a pole that's going in just above my butt and travelling along my lower spine. The rest of the time it feels like there's a knife in my back and someone is slowly twisting it. The pain often hits an 8 on the doc's beloved pain scale (1 to 10). Staying still can knock it down to a 6 but it is has been so constant that I'm just overwhelmed by it. It is often so overwhelming that I can't even really watch TV. FYI -- the ceiling above the bed is boring, the fan's a little more interesting. This post is being written in 15 minute increments since that's about my attention span.
I'm a bit at a loss of what to do. I've never been bed-ridden for more than a day or two (that was endo related and I usually knew it was coming). I've struggled through my errands....including an annual Gyn appointment which is what every woman wants to do when she's already in pain and which always means kicking up the endo pain too. The doc is giving me medicine that is supposed to help mentally deal with pain but doesn't want to give me more pain meds. I was so happy to be entirely free of them and part of me wouldn't want to go back to medicines, but that's outweighed by wanting to feel human.
I guess it is good that I don't have a job so don't have to worry about the time off. I did have to give up my law blog ghostwriting for the past two weeks which makes me feel pathetic. I covered a small event for Friday's edition of the little freebie paper (page 4 of the 3/9/12 edition if you are dying to know about the Bellefonte Math Family Fun Night). Luckily I could cover that in only about a ten minute visit. Tonight I have a bigger event for the paper and I'm nervous. I was really excited to be asked to cover it since it is a benefit dinner for the Bellefonte Education Foundation. Now I'm just plain nervous about getting through the event (2-3 hours).
I had the surgery. I went through the recovery. I worked hard at PT for four months. I did the x-rays and they showed my bones were growing. I did it all. Yesterday marked seven months. It wasn't supposed it be like this. I really thought I was improving and was doing okay as I stepped down my medicines. I guess I knew it was coming back whenever they wore off but it was very manageable. Now that the pain is constant, it isn't.
I have an MRI scheduled for the 19th and am meeting with a pain specialist on the 29th....I need a fast-forward button to get me there.
I'm still spending most of the day in bed, where I've been for the better part of two weeks. If I stay perfectly still, the pain is manageable. But even moving to use the bathroom shoots it back up. I'm stubborn and tried to sit with MM for our nightly Daily Show and Colbert Report reruns (they show the prior night's episodes at 6 and 630) the past couple of nights...it feels like I'm sitting on a pole that's going in just above my butt and travelling along my lower spine. The rest of the time it feels like there's a knife in my back and someone is slowly twisting it. The pain often hits an 8 on the doc's beloved pain scale (1 to 10). Staying still can knock it down to a 6 but it is has been so constant that I'm just overwhelmed by it. It is often so overwhelming that I can't even really watch TV. FYI -- the ceiling above the bed is boring, the fan's a little more interesting. This post is being written in 15 minute increments since that's about my attention span.
I'm a bit at a loss of what to do. I've never been bed-ridden for more than a day or two (that was endo related and I usually knew it was coming). I've struggled through my errands....including an annual Gyn appointment which is what every woman wants to do when she's already in pain and which always means kicking up the endo pain too. The doc is giving me medicine that is supposed to help mentally deal with pain but doesn't want to give me more pain meds. I was so happy to be entirely free of them and part of me wouldn't want to go back to medicines, but that's outweighed by wanting to feel human.
I guess it is good that I don't have a job so don't have to worry about the time off. I did have to give up my law blog ghostwriting for the past two weeks which makes me feel pathetic. I covered a small event for Friday's edition of the little freebie paper (page 4 of the 3/9/12 edition if you are dying to know about the Bellefonte Math Family Fun Night). Luckily I could cover that in only about a ten minute visit. Tonight I have a bigger event for the paper and I'm nervous. I was really excited to be asked to cover it since it is a benefit dinner for the Bellefonte Education Foundation. Now I'm just plain nervous about getting through the event (2-3 hours).
I had the surgery. I went through the recovery. I worked hard at PT for four months. I did the x-rays and they showed my bones were growing. I did it all. Yesterday marked seven months. It wasn't supposed it be like this. I really thought I was improving and was doing okay as I stepped down my medicines. I guess I knew it was coming back whenever they wore off but it was very manageable. Now that the pain is constant, it isn't.
I have an MRI scheduled for the 19th and am meeting with a pain specialist on the 29th....I need a fast-forward button to get me there.
Friday, March 9, 2012
Two Reviews, Because I'm Tired of Staring at the Ceiling...Started Early, Took My Dog (Atkinson) and The Winter Sea (Kearsley)
I confess....I'm not doing well at all. My back pain is really bad....like spent the past week and a half in bed bad. I've never been bed-ridden before, not even the weeks right after surgery. I haven't been on any pain meds and the pain is overwhelming. If I stay perfectly still, it's a 6 of 10 but trying to even just go to the bathroom can knock it up to an 8. The pain is simply winning....at times I can't even focus on stupid daytime TV and I've spent hours just staring at the ceiling. I had to hand off my ghost writing posts this week which makes me feel really useless.
These were written in pieces but I stubbornly want to get two reviews done. I've largely read in fifteen minutes snatches recently...that's about my attention span. Won't be my "deepest" reviews but I feel a need to get them done. Then I shall go back to examining the ceiling fan.
I don't read many detective stories but an online friend introduced me to Atkinson's series of Jackson Brodie books. They revolve around a private detective with a messy personal life and each one includes several different stories that inevitably meet in some fashion. Started Early is the latest in the series and includes stories related to a woman seeking the truth about her identity, an old cover-up, an aging actress, and a mysterious young girl that a former cop buys (that's not a euphemism) from a prostitute.
I enjoyed the book, although I definitely felt some of the storylines dragged a bit. I like that Atkinson builds interesting, imperfect characters and particularly enjoyed the story of the former cop and the little girl. I was less interested in the parts about the aging actress...they bored me a bit and I wasn't invested in them. Still, it was a fun read. A bit on the mind candy side for me but that's good in the right dose. 3.5 stars, rounded up because it simply did what I expected it to do....it was an enjoyable read and I liked visiting it each night but didn't get or expect anything deeper.
This simply wasn't what I'd hoped for when I bought it. I like what I term "literary mysteries" where the embedded stories help develop a mystery storyline and this just wasn't that sort of book. It is a historical romance and those have limited appeal for me. I think people who like sweeping romances with a large dose of history would enjoy this but it only hits three stars for me. I'd felt a bit bad by how much my own bias was impacting my rating, I do think she does her genre well, but I strongly disliked the way the book (esp the embedded novel) ended so feel firmer in my rating. Recommended for lovers of historical romance...just stop reading about 40 pages from the end and you'll like it!
These were written in pieces but I stubbornly want to get two reviews done. I've largely read in fifteen minutes snatches recently...that's about my attention span. Won't be my "deepest" reviews but I feel a need to get them done. Then I shall go back to examining the ceiling fan.
- Started Early, Took My Dog by Kate Atkinson
I don't read many detective stories but an online friend introduced me to Atkinson's series of Jackson Brodie books. They revolve around a private detective with a messy personal life and each one includes several different stories that inevitably meet in some fashion. Started Early is the latest in the series and includes stories related to a woman seeking the truth about her identity, an old cover-up, an aging actress, and a mysterious young girl that a former cop buys (that's not a euphemism) from a prostitute.
I enjoyed the book, although I definitely felt some of the storylines dragged a bit. I like that Atkinson builds interesting, imperfect characters and particularly enjoyed the story of the former cop and the little girl. I was less interested in the parts about the aging actress...they bored me a bit and I wasn't invested in them. Still, it was a fun read. A bit on the mind candy side for me but that's good in the right dose. 3.5 stars, rounded up because it simply did what I expected it to do....it was an enjoyable read and I liked visiting it each night but didn't get or expect anything deeper.
- The Winter Sea by Susanna Kearsley
This simply wasn't what I'd hoped for when I bought it. I like what I term "literary mysteries" where the embedded stories help develop a mystery storyline and this just wasn't that sort of book. It is a historical romance and those have limited appeal for me. I think people who like sweeping romances with a large dose of history would enjoy this but it only hits three stars for me. I'd felt a bit bad by how much my own bias was impacting my rating, I do think she does her genre well, but I strongly disliked the way the book (esp the embedded novel) ended so feel firmer in my rating. Recommended for lovers of historical romance...just stop reading about 40 pages from the end and you'll like it!
Monday, March 5, 2012
Endo Awareness Month: Physical Side
I confess...I'm not really feeling up for writing these days. Which says a lot. I've been having intense lower back pain and am really upset by it. I'd stopped all pain medication and it became immediately clear that my pain was managed but not truly fixed. I'm waiting on a referral to a pain management doctor and spending much of my day in bed. I didn't even do that in the immediate post-op period so it says a lot that I'm skipping workouts and spending most of my time lying down.
But that's not what I'm coming to talk about. As part of Endometriosis Awareness Month, I'm participating in a group effort to educate the blogosphere about the condition. Each week will have a topic and I'm going to try to post on Mondays. I apologize that this post is not better written...it deserves more energy than I have to give right now.
This week's topic is the physical impact of endometriosis. From the time they started, my periods were always very heavy. At first, there was minimal pain but it seemed to creep upwards each month. I began to find myself with severe pelvic pain each month but I simply assumed it was "normal" and something I had to live with. The pain got severe and eventually became all month-long but I still didn't speak up. And then it got bad enough that I passed out in my office. I was put in a cab and taken to the doctor. Endo was suspected from the start and I simply knew it was the culprit but we ran countless other tests first since endo can only be diagnosed via surgery. I remember coming out of surgery and feeling a mixture of relief and fear when the endo was confirmed. I wasn't crazy and I had a name (a huge mental comfort), but it was an incurable condition and one I'd be facing for many years to come.
Endo can be managed, but not yet cured. I've been on continuous birth control for years. I don't take the week of placebo pills and thus don't get a monthly period. For a while, I did take the break week once every four months but I'd end up bed-ridden for at least a couple days. Finally, my doctor said to just abandon it. I've had three surgeries which have provided some relief in the short-term but it seems determined to come back. The pills do help control things but the pain still breaks through sometimes. I can't really predict when it'll happen but I usually have pain at least once a week. If I miss a pill for any reason, I know the pain will follow. Even when I take the active pills daily, the pain can rise to an eight on a scale of one to ten. I've described it as a giant hand reaching inside me and squeezing and twisting everything below my belly button. At times, it gets bad enough that I essentially pass out....sometimes I actually start hoping for that last notch of pain so I can "go away." It isn't quite fainting and isn't quite sleep, it is just my mind giving in and escaping my body.
I can't fully explain chronic pain to anyone who hasn't loved with it. I can put on a "people face" and look normal when I have to but it takes a lot of energy. Living with the menace of pain is exhausting and hard. It helps to know I'm not alone and that I have many other women fighting by my side. We tend to look perfectly normal but we're coping with a lot. I hope for all of our sake that we can one day find a cure rather than simply managing the symptoms.
But that's not what I'm coming to talk about. As part of Endometriosis Awareness Month, I'm participating in a group effort to educate the blogosphere about the condition. Each week will have a topic and I'm going to try to post on Mondays. I apologize that this post is not better written...it deserves more energy than I have to give right now.
This week's topic is the physical impact of endometriosis. From the time they started, my periods were always very heavy. At first, there was minimal pain but it seemed to creep upwards each month. I began to find myself with severe pelvic pain each month but I simply assumed it was "normal" and something I had to live with. The pain got severe and eventually became all month-long but I still didn't speak up. And then it got bad enough that I passed out in my office. I was put in a cab and taken to the doctor. Endo was suspected from the start and I simply knew it was the culprit but we ran countless other tests first since endo can only be diagnosed via surgery. I remember coming out of surgery and feeling a mixture of relief and fear when the endo was confirmed. I wasn't crazy and I had a name (a huge mental comfort), but it was an incurable condition and one I'd be facing for many years to come.
Endo can be managed, but not yet cured. I've been on continuous birth control for years. I don't take the week of placebo pills and thus don't get a monthly period. For a while, I did take the break week once every four months but I'd end up bed-ridden for at least a couple days. Finally, my doctor said to just abandon it. I've had three surgeries which have provided some relief in the short-term but it seems determined to come back. The pills do help control things but the pain still breaks through sometimes. I can't really predict when it'll happen but I usually have pain at least once a week. If I miss a pill for any reason, I know the pain will follow. Even when I take the active pills daily, the pain can rise to an eight on a scale of one to ten. I've described it as a giant hand reaching inside me and squeezing and twisting everything below my belly button. At times, it gets bad enough that I essentially pass out....sometimes I actually start hoping for that last notch of pain so I can "go away." It isn't quite fainting and isn't quite sleep, it is just my mind giving in and escaping my body.
I can't fully explain chronic pain to anyone who hasn't loved with it. I can put on a "people face" and look normal when I have to but it takes a lot of energy. Living with the menace of pain is exhausting and hard. It helps to know I'm not alone and that I have many other women fighting by my side. We tend to look perfectly normal but we're coping with a lot. I hope for all of our sake that we can one day find a cure rather than simply managing the symptoms.
Thursday, March 1, 2012
Endo Awareness Month
I confess...I don't really own yellow. Well, I have an old shirt from college when I worked on a congressional campaign but that's def sleep-only material.
But March is endometriosis awareness month and March 1 is Wear Yellow Day for Endo Awareness so I will at least share a yellow ribbon here. As most of my readers know, I deal with this painful condition as a regular part of my life. It is under-researched and there is no cure, despite it affecting millions of women and causing them severe, chronic pain and often fertility issues (not likely an issue for me).
I will be posting other posts in the coming weeks talking about my endo journey in an effort to help the blogosphere become more aware of this health issue.
Hopefully I can make this link to the blog group set up by Jamee play nice:
But March is endometriosis awareness month and March 1 is Wear Yellow Day for Endo Awareness so I will at least share a yellow ribbon here. As most of my readers know, I deal with this painful condition as a regular part of my life. It is under-researched and there is no cure, despite it affecting millions of women and causing them severe, chronic pain and often fertility issues (not likely an issue for me).
I will be posting other posts in the coming weeks talking about my endo journey in an effort to help the blogosphere become more aware of this health issue.
Hopefully I can make this link to the blog group set up by Jamee play nice:
Subscribe to:
Posts (Atom)