The man I'd been seeing since late June has been ghosting me for over a week. I know that something bad happened in his life but no more. After we'd started spending time together I was very happy. Many people commented on it. I asked myself, will I be as unhappy if/when this ends? But told myself not to overthink it and just enjoy. I had a reason to look forward to each week and had hope for the future.
Big mistake. I should have listened to that voice and backed away. I should have guarded my heart instead of trusting that the lessons I'd learned from past relationships would help this time. I hadn't factored that I don't get to have the things that everyone else does. No health, no job or career, no partner. None of that is for me.
I'm sure my broken heart will heal eventually; it always has. But for right now I hate almost everything about my life. I am very thankful for good friends, and my mom has been very supportive, but this still feels like too much to bear.
Showing posts with label thoughts. Show all posts
Showing posts with label thoughts. Show all posts
August 28, 2019
June 6, 2019
The simplicity of hard choices
I've been thinking about hard decisions. We often frame them as choices between right vs wrong or good vs bad. Even simpler than that is the question I ask myself: will I like who I am more or less based on what I decide?
My ex-husband was an abusive narcissist. I watched him make choice after choice to become that person. At first they were very small decisions, not even perceptible as good vs bad. At the end of two years, however, he was no longer recognizable as himself. I learned that every choice to sacrifice your ethics for convenience or selfishness compounds. A tiny compromise now becomes difficult or impossible to recover from when repeated enough times.
Today I had the opportunity to believe a friend or not. Faced with an uncomfortable fact, what do I do? I chose to set aside the ego I had in my own judgement and trust someone else's experience. I didn't need to know both sides of the issue because only one side mattered: my friend's. I know the power of being believed and having my experiences valued. Being able to do that for others is a gift.
My ex-husband was an abusive narcissist. I watched him make choice after choice to become that person. At first they were very small decisions, not even perceptible as good vs bad. At the end of two years, however, he was no longer recognizable as himself. I learned that every choice to sacrifice your ethics for convenience or selfishness compounds. A tiny compromise now becomes difficult or impossible to recover from when repeated enough times.
Today I had the opportunity to believe a friend or not. Faced with an uncomfortable fact, what do I do? I chose to set aside the ego I had in my own judgement and trust someone else's experience. I didn't need to know both sides of the issue because only one side mattered: my friend's. I know the power of being believed and having my experiences valued. Being able to do that for others is a gift.
October 21, 2018
42 and 25
October is a strange month in my life. Last week I turned 42 years old and the week before that marked 25 years since my constant headache started and I became chronically ill. I remember brief clips from that time: crying in pain while waiting for my mom to get home from work; listening to my mom unenrolling me from my community college class with tangled feelings of relief and failure; a kind nurse holding my sweaty hand while the doctor performed a lumbar puncture; thinking that surely I'd be better by Thanksgiving, by New Year's, by Senior year. I turned to hand work and old movies, which is when I started quilting and taught myself to knit. An inpatient headache clinic decreased and stabilized the pain enough that I could attend college part time with my friends.
I've been trying to write a second paragraph for days but can't find the right thing to say. As the autoimmune cognitive disfunction worsens it gets harder and harder for me to put thoughts into words. I've made the best life I can given the constraints and difficulties. Pain and illness have changed me in fundamental ways and have pushed me outside the mainstream. I don't have the career or romantic partnership that I assumed I would, nor do I have relatable experiences or anything resembling a normal life. But I'm usually happy and probably enjoy life more than the average person. Above all I try to love others and be kind.
Right now I'm going to be kind to myself and take a nap.
I've been trying to write a second paragraph for days but can't find the right thing to say. As the autoimmune cognitive disfunction worsens it gets harder and harder for me to put thoughts into words. I've made the best life I can given the constraints and difficulties. Pain and illness have changed me in fundamental ways and have pushed me outside the mainstream. I don't have the career or romantic partnership that I assumed I would, nor do I have relatable experiences or anything resembling a normal life. But I'm usually happy and probably enjoy life more than the average person. Above all I try to love others and be kind.
Right now I'm going to be kind to myself and take a nap.
I climbed a view tower yesterday in memory of an arthritis friend who passed away recently.
December 31, 2017
2017 Turdnado
Hello from this last day of 2017. My brain is doing the fun thing of reflecting on all the disappointments of the past year. There were some positive moments, for sure, but generally it was a downhill slog. The thing I feared happened: most of the gains I'd worked for evaporated as my health deteriorated. Plus our collective psyche has been damaged by the toxic political climate, hitting all of us in very personal ways.
I try not to focus on the strength that allowed me to persevere. It's a mixed blessing, and one that makes me appear more independent and less alone than I am. The losses of this year hit me hard--lost health, lost friendships, lost long-term relationship--and adding them to my life-long grief list doesn't feel good at all. I'm not sorry to be alive and sane, don't get me wrong, but life is still tremendously difficult.
Practicing good self care helped, though. I finished and wore the Water breakup shawl last week: it's very soft and cozy. I'm unabashedly my own weird self. And friends online and in person are the joy in my life.
Instead of looking back I'm focusing on Jan 5th's Awesome Rheumy appt. The thought of her examining my hands makes me want to cry, but at least my symptoms are visible? I have no idea what the next step will be. Brain in a jar is sounding pretty good right now but she probably has a couple ideas before we take that step ;) Being able to walk, think, sleep soundly, and socialize are my giant unspoken goals.
If this post sounds conflicted...well that's because I am! Teetering between optimism and realism, trying to hope for the best while bracing for the worst, living in the moment unless that moment is miserable in which case distract-distract-distract, and questioning the meaning of it all: that's me summed up in one terrible run-on sentence.
I try not to focus on the strength that allowed me to persevere. It's a mixed blessing, and one that makes me appear more independent and less alone than I am. The losses of this year hit me hard--lost health, lost friendships, lost long-term relationship--and adding them to my life-long grief list doesn't feel good at all. I'm not sorry to be alive and sane, don't get me wrong, but life is still tremendously difficult.
Practicing good self care helped, though. I finished and wore the Water breakup shawl last week: it's very soft and cozy. I'm unabashedly my own weird self. And friends online and in person are the joy in my life.
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| Water posed on my Christmas tree |
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Top left: April's Peepicide; Top right: brownies for Sweetie
Bottom left: Xmas tree; Bottom right: my new hat!
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Instead of looking back I'm focusing on Jan 5th's Awesome Rheumy appt. The thought of her examining my hands makes me want to cry, but at least my symptoms are visible? I have no idea what the next step will be. Brain in a jar is sounding pretty good right now but she probably has a couple ideas before we take that step ;) Being able to walk, think, sleep soundly, and socialize are my giant unspoken goals.
If this post sounds conflicted...well that's because I am! Teetering between optimism and realism, trying to hope for the best while bracing for the worst, living in the moment unless that moment is miserable in which case distract-distract-distract, and questioning the meaning of it all: that's me summed up in one terrible run-on sentence.
May we all have a better 2018. May love win.
October 7, 2017
A kinder, gentler October
After a rugged September I'm relieved that October has started off well. I now have home care (cleaning, chore help, etc) covered by my insurance, provided by an awesome lady in my building. She wants to learn to knit so I may make a new friend as well :)
My local best friend is moving into the city--today in fact! We get up to the best shenanigans and I know she'll be much happier not living far away from all the fun things.
I saw my rheumatologist yesterday and she's doubling my immunosuppressant dose. After a month we'll know whether it's helping or not, and if not we'll switch to a new biologic. Heading into Thanksgiving and the winter holidays with a plan that's not "watch and wait for months and months" will help my mood.
I'm still working on recovering from the breakup. My clever plan to find community was abandoned after hitting the wall that is my body's limitations. Once again I was reminded that I'm doing my best. Instead I've been taking long naps and staying engaged with friends online.
My local best friend is moving into the city--today in fact! We get up to the best shenanigans and I know she'll be much happier not living far away from all the fun things.
I saw my rheumatologist yesterday and she's doubling my immunosuppressant dose. After a month we'll know whether it's helping or not, and if not we'll switch to a new biologic. Heading into Thanksgiving and the winter holidays with a plan that's not "watch and wait for months and months" will help my mood.
I'm still working on recovering from the breakup. My clever plan to find community was abandoned after hitting the wall that is my body's limitations. Once again I was reminded that I'm doing my best. Instead I've been taking long naps and staying engaged with friends online.
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| Ella helps model my latest knitting project |
September 17, 2017
Another one bites the dust
I am once again a single woman. After stringing me along for months and lying about his feelings and intentions, finally on Friday Sweetie just...let go. He was not stronger than his fears, especially when he started believing the lies depression told him. I'm still in shock but friends have had many kind words and that helps a lot.
Cat litter calls: feel free to admire my breakup yarn while you wait.
I forget how weak many people are and how scared they are of love. Love is the reason I get up in the morning. It's what gives my life meaning and joy. Love makes my heart sing even when tears are falling.
I realize I cannot rely on the fickle nature of romantic attachments for my future. What I truly long for is community and family. There have to be local families who would love an honorary aunt. To that end I'm going to start attending a community church on Sunday evenings. It's a bit of a trek and previously had conflicted with my support group meetings then softball spectating (ugh!). But now is the time. Maybe this is an unattainable goal but all my goals seem out of reach so why not aim for the stars?
Cat litter calls: feel free to admire my breakup yarn while you wait.
I forget how weak many people are and how scared they are of love. Love is the reason I get up in the morning. It's what gives my life meaning and joy. Love makes my heart sing even when tears are falling.
I realize I cannot rely on the fickle nature of romantic attachments for my future. What I truly long for is community and family. There have to be local families who would love an honorary aunt. To that end I'm going to start attending a community church on Sunday evenings. It's a bit of a trek and previously had conflicted with my support group meetings then softball spectating (ugh!). But now is the time. Maybe this is an unattainable goal but all my goals seem out of reach so why not aim for the stars?
June 27, 2017
One more thing x 10²³
I saw my PCP yesterday for a physical. She noticed a heart murmur, one that definitely wasn't there during a cardiac workup in 2014. So it's back to radiology for another echocardiogram which at least is a cool and painless test. I'm super glad to be seeing Awesome Rheumy in 9 days (yep, I'm counting) rather than continuing to free fall without a rheumatologist or treatment.
I spent much of the last two days emotionally confused. Heart damage is not good, even a just a little bit. But this feels like a solidly Real Symptom that may help with an SLE diagnosis. And that would lead to greater treatment options, including clinical trials if I run out of new meds to try. Evidence that my borked immune system is winning is still tough to handle. But chronic illness has honed my ability to quickly adapt and accept, and that I have!
Sunday was a gorgeous hot day, the kind we rarely get and even more rarely can truly enjoy. My mom and I went to Mt Rainier and gawked at the views. I totally crashed on the way back and slept in the back seat. But seizing the day was worth it!
I spent much of the last two days emotionally confused. Heart damage is not good, even a just a little bit. But this feels like a solidly Real Symptom that may help with an SLE diagnosis. And that would lead to greater treatment options, including clinical trials if I run out of new meds to try. Evidence that my borked immune system is winning is still tough to handle. But chronic illness has honed my ability to quickly adapt and accept, and that I have!
Sunday was a gorgeous hot day, the kind we rarely get and even more rarely can truly enjoy. My mom and I went to Mt Rainier and gawked at the views. I totally crashed on the way back and slept in the back seat. But seizing the day was worth it!
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April 18, 2017
The high price of subsidized housing
I started writing this post in Oct 2015 but left it unfinished because this topic makes me angry and depressed. But in the last month Screamypants (my next door neighbor) feloniously assaulted her own guest, my moth war proved to be hopeless, and someone took a heroin withdrawal shit in the elevator.
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You cannot understand the transaction until you've lived it but let me try to explain: subsidized housing is easy on the checkbook but takes a big bite out of your pride. I am willing to give up dignity for happiness, ready to sacrifice my ego to create a partnership of love and caring. But I resent paying what can feel like a piece of my soul to rent a crummy apartment that was designed, built and maintained on the cheap by people who largely don't care.
Subsidized housing is the Hav a Heart trap for humans. First you hand over bank statements, have your income checked by IRS, bring your Social Security card and photo ID, and spend an hour signing a tall stack of forms that equate to "don't eat lead paint" and "don't set the building on fire." You think you're getting everything you need: a sturdy box, food, your own space. Later you realize it's a metal cage and the out-of-date tuna doesn't smell quite right. But by that time you're stuck living what can be a nightmare in theoretically normal housing.
From the outside my life probably seems fine. The victim blaming voice in my head even suggests that it's partly my fault for making this look too easy. My options are slim, being unable to work and living on $735/mo disability. Without my disability I could work, without my disability I could drive, without my disability I wouldn't need quick access to Seattle's medical centers. But with my disability I am poor and practically invisible.
I feel affinity for this quote about raccoons. "Their willingness to persist on our leftovers while living in marginal habitats makes them very common."
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Fun fact: while I've been writing this two Very Loud Women have been hollering at a third woman in the parking lot outside, at 1:30am. Third woman took a building resident's parking spot. The building resident parked their van behind her. And the two others are trying to Very Loudly direct her out of the spot. Third woman is a poor driver and terrible at geometry, however, so this has carried on for at least 15min and she's no closer to being free. I wish I had a hose to turn on them.
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You cannot understand the transaction until you've lived it but let me try to explain: subsidized housing is easy on the checkbook but takes a big bite out of your pride. I am willing to give up dignity for happiness, ready to sacrifice my ego to create a partnership of love and caring. But I resent paying what can feel like a piece of my soul to rent a crummy apartment that was designed, built and maintained on the cheap by people who largely don't care.
Subsidized housing is the Hav a Heart trap for humans. First you hand over bank statements, have your income checked by IRS, bring your Social Security card and photo ID, and spend an hour signing a tall stack of forms that equate to "don't eat lead paint" and "don't set the building on fire." You think you're getting everything you need: a sturdy box, food, your own space. Later you realize it's a metal cage and the out-of-date tuna doesn't smell quite right. But by that time you're stuck living what can be a nightmare in theoretically normal housing.
From the outside my life probably seems fine. The victim blaming voice in my head even suggests that it's partly my fault for making this look too easy. My options are slim, being unable to work and living on $735/mo disability. Without my disability I could work, without my disability I could drive, without my disability I wouldn't need quick access to Seattle's medical centers. But with my disability I am poor and practically invisible.
I feel affinity for this quote about raccoons. "Their willingness to persist on our leftovers while living in marginal habitats makes them very common."
Fun fact: while I've been writing this two Very Loud Women have been hollering at a third woman in the parking lot outside, at 1:30am. Third woman took a building resident's parking spot. The building resident parked their van behind her. And the two others are trying to Very Loudly direct her out of the spot. Third woman is a poor driver and terrible at geometry, however, so this has carried on for at least 15min and she's no closer to being free. I wish I had a hose to turn on them.
April 14, 2017
Cleaning while chronically ill
Something you don't think about when entering the Kingdom of the Sick is cleanliness. You don't ponder how to scrub the toilet or vacuum under the couch until your body always wants to sleep and your hands are glowing with pain. You don't mind the dust until you are powerless to remove it.
Usually people enter my home and say "it looks clean" or some variation thereon. Which is true but can imply judgement: why are you asking for help when your home is cleaner than mine? They don't see the dust that accumulates under and behind everything. They can't understand my panic at clothing moths entering from other apartments and trying to nest in my woolens. Or that cat vomit is dried to the floor under my bed because I can't reach it.
I like my apartment. It's well located, my unit is bright and spacious, I can afford the rent. But the building is dirty. The ventilation system has likely never been cleaned so dust and grit are blown everywhere. Neighbors have pests which infiltrate my home. The shower caulking mildewed and maintenance's solution was to apply clear caulk over that. Dirt has accumulated in every crack. And I'm powerless to change this.
I struggle to accept this reality but I cannot consistently do so. I've had help cleaning but it's impossible to ask someone to clean what they can't see. And I'm the only one who takes a more than cursory glance at my home. I will never solve the clothing moth problem while I live in this building. For someone whose medium is wool that is a painful fact.
Usually people enter my home and say "it looks clean" or some variation thereon. Which is true but can imply judgement: why are you asking for help when your home is cleaner than mine? They don't see the dust that accumulates under and behind everything. They can't understand my panic at clothing moths entering from other apartments and trying to nest in my woolens. Or that cat vomit is dried to the floor under my bed because I can't reach it.
I like my apartment. It's well located, my unit is bright and spacious, I can afford the rent. But the building is dirty. The ventilation system has likely never been cleaned so dust and grit are blown everywhere. Neighbors have pests which infiltrate my home. The shower caulking mildewed and maintenance's solution was to apply clear caulk over that. Dirt has accumulated in every crack. And I'm powerless to change this.
I struggle to accept this reality but I cannot consistently do so. I've had help cleaning but it's impossible to ask someone to clean what they can't see. And I'm the only one who takes a more than cursory glance at my home. I will never solve the clothing moth problem while I live in this building. For someone whose medium is wool that is a painful fact.
March 12, 2017
Grief, Acceptance, and Deja Vu
I haven't written in a while. Expressing coherent thoughts has been very difficult the last three months. And I've been going through the same freaking grief cycle yet again. I get sicker, I lose parts of my life, I can't accept it but have to live with it. Rinse and repeat.
Making gains means any subsequent loss has already been processed, right? Hahaha, no. It's more grief, this time with the fun twist of knowing what the future holds.
I'm getting too dizzy to continue so I'll sign off. Life feels exhausting right now. Maybe by morning I'll forget how far removed this is from the norm. Denial is a big coping skill.
Making gains means any subsequent loss has already been processed, right? Hahaha, no. It's more grief, this time with the fun twist of knowing what the future holds.
I'm getting too dizzy to continue so I'll sign off. Life feels exhausting right now. Maybe by morning I'll forget how far removed this is from the norm. Denial is a big coping skill.
February 22, 2017
Refractory disease
I'm all but diagnosed with treatment-resistant CNS lupus. Next week we will mine my brain to determine how great the impact is, then begin an immunosuppressant medication. The super targeted approach has failed and it's time for bigger guns.
I'm so used to accepting my reality as normal that I forget how abnormal this all is. I've become isolated by higher fatigue and the frequent inability to drive. But I don't know how to talk about the fact that this disease is winning, especially as I work so hard to hold things together. I don't want to live the rest of my life jumping from medication to medication as they all fail in turn. Yet I don't see another option.
In the meantime, I'll keep knitting. I cast on Morvarch Jan 1st and have been diligently knitting since then. The interesting bits are mostly done, now it's a long stockinette march to the end.
I'm so used to accepting my reality as normal that I forget how abnormal this all is. I've become isolated by higher fatigue and the frequent inability to drive. But I don't know how to talk about the fact that this disease is winning, especially as I work so hard to hold things together. I don't want to live the rest of my life jumping from medication to medication as they all fail in turn. Yet I don't see another option.
In the meantime, I'll keep knitting. I cast on Morvarch Jan 1st and have been diligently knitting since then. The interesting bits are mostly done, now it's a long stockinette march to the end.
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| The yarn is "Emerald City" by Hazel Knits, it looks like evergreen trees :) |
January 16, 2017
Unafraid
My goal for 2017 is to be unafraid. Despite politics, despite attacks on healthcare that directly threaten people I love, despite my own health issues. I know I will survive because that's what I do. I choose to face the future, unflinching and unafraid. That's how I can honor Dr King's legacy.
November 14, 2016
Happy Thoughts
It's been a week. I won't dwell on my fears. Instead I'll share some positives.
Last Monday I visited a friend in Centralia (85mi south). She made me two beaded shawl pins to match my Watermelon Daybreak shawl. I knit on it while we sat together in her husband's hospital room this May.
I've worked hard to make a good life and to become the woman I am. I'm lucky enough to have assembled a team of friends who genuinely like me and I even have a sweetheart :)
Plus I live in a city where even the sidewalk gardens can be motivational:
Last Monday I visited a friend in Centralia (85mi south). She made me two beaded shawl pins to match my Watermelon Daybreak shawl. I knit on it while we sat together in her husband's hospital room this May.
Plus I live in a city where even the sidewalk gardens can be motivational:
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| Hang in there |
October 27, 2016
Busy Few Months
I am so used to quickly adapting to life changes that I surprised myself with how much has happened recently. Let's break it down:
June: holy wow, Benlysta is working!
July: Summer has a boyfriend
Aug: Jake diagnosed with lymphoma; support group co-leader quit
Sept: Jake euthanized; family gathering in Pennsylvania
Oct: never-ending cold; my 40th bday; new co-leader
So, yeah, a lot going on. I've stayed productive, made and kept friendships, and my fella is still around :D I've been struggling with high pain some days but managing well despite that.
June: holy wow, Benlysta is working!
July: Summer has a boyfriend
Aug: Jake diagnosed with lymphoma; support group co-leader quit
Sept: Jake euthanized; family gathering in Pennsylvania
Oct: never-ending cold; my 40th bday; new co-leader
So, yeah, a lot going on. I've stayed productive, made and kept friendships, and my fella is still around :D I've been struggling with high pain some days but managing well despite that.
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| Friday night prefunk with a friend |
September 3, 2016
Six years, 400 posts
Happy sixth birthday, blog! I started this blog to share sewing projects plus some random thoughts. But my health got worse--hello autoimmune disease--so that's become the focus. As interests and hobbies are stripped away I realize just how important people are. Any energy left after doing the things that need done, that's how I spend it.
But 400 posts? I had no idea I had that much to say. I was reading some old posts and realized that I'm pretty much the same person now. The more we change, eh? Maybe I've written myself out--I can't think of anything else to say ;)
But 400 posts? I had no idea I had that much to say. I was reading some old posts and realized that I'm pretty much the same person now. The more we change, eh? Maybe I've written myself out--I can't think of anything else to say ;)
August 26, 2016
Chronic Illness Portmanteaux*
There is specialized vocabulary associated with chronic illness. Painsomnia comes immediately to mind: a combination of pain and insomnia. It even has an Urban Dictionary listing. Or when you randomly start itching, those are the histameanies. Histameanies and I go way back and they're the reason I always carry Benadryl.
Maybe you've heard of hangry (hungry-angry) but paingry was new to me. And watch out for hangry paingry! A friend introduced me to the term pain coma. That's where you hurt so much you become non-functional. I lose the ability to make decisions or speak during pain coma, which is bad news if I'm out and about. Chronic illness forces you to learn just how far you can push yourself. I try to always have cash, for example, in case I start to crash and need to pay for my meal or drink and skedaddle.
There's also much discussion of spoons. I have energy spoons, joint spoons, braining spoons, social spoons, talking good with words spoons, and so on. Sometimes I wonder why I'm so fatigued on a particular day. Then I remember that oh yeah, I'm in big pain. Most of the time I forget and can happily go about my life. Happy means the same thing in both the chronic and healthy worlds.
* Why is the word portmanteau so long? Shouldn't it have an abbreviation for itself?
Maybe you've heard of hangry (hungry-angry) but paingry was new to me. And watch out for hangry paingry! A friend introduced me to the term pain coma. That's where you hurt so much you become non-functional. I lose the ability to make decisions or speak during pain coma, which is bad news if I'm out and about. Chronic illness forces you to learn just how far you can push yourself. I try to always have cash, for example, in case I start to crash and need to pay for my meal or drink and skedaddle.
There's also much discussion of spoons. I have energy spoons, joint spoons, braining spoons, social spoons, talking good with words spoons, and so on. Sometimes I wonder why I'm so fatigued on a particular day. Then I remember that oh yeah, I'm in big pain. Most of the time I forget and can happily go about my life. Happy means the same thing in both the chronic and healthy worlds.
July 14, 2016
Posh or Not
First impressions are important. No matter what a doctor may have read in my chart, she still forms an opinion of me when we meet. I present as an intelligent, educated, middle class white woman (undereye concealer plays a big role). In short: posh. In reality I'm poor, prefer rock to classical, dropped out of college, and am decidedly unfancy. Just thinking about being posh makes me itch.
Sometimes my "healthy person drag" counts against me, making me seem like a bored, attention-seeking malingerer. The best docs see through that, however, and realize the effort involved in creating that illusion. Having pride in myself shows that I haven't lost hope, that I want to function in and enjoy the world. The best medical professionals take me seriously, accept the contrast between my outward appearance and extensive medical record, and work with me to build a treatment partnership. You don't have to be or look posh to do that.
Sometimes my "healthy person drag" counts against me, making me seem like a bored, attention-seeking malingerer. The best docs see through that, however, and realize the effort involved in creating that illusion. Having pride in myself shows that I haven't lost hope, that I want to function in and enjoy the world. The best medical professionals take me seriously, accept the contrast between my outward appearance and extensive medical record, and work with me to build a treatment partnership. You don't have to be or look posh to do that.
This day I was looking particularly good :)
July 12, 2016
Let's Talk About Pain
I'm always in pain; it's a fact of my life. Yet I almost never talk about it. Pain is not relatable, pain is unquantifiable, pain is invisible, and pain is personal. With the war on opioids, pain is also political.
The amount of daily pain I experience is unimaginable to the average person. Yet I'm so used to it that I forget how abnormal it is. The Mankoski scale is a good gauge with caveats: 22 years of constant pain mean my brain and lifestyle have adapted. And pain meds (please don't call them painkillers) don't work on my pain.
The amount of daily pain I experience is unimaginable to the average person. Yet I'm so used to it that I forget how abnormal it is. The Mankoski scale is a good gauge with caveats: 22 years of constant pain mean my brain and lifestyle have adapted. And pain meds (please don't call them painkillers) don't work on my pain.
6 – Can’t be ignored for any length of time, but you can still go to work and participate in social activities. Stronger painkillers (Codeine, narcotics) reduce pain for 3-4 hours.
7 – Makes it difficult to concentrate, interferes with sleep. You can still function with effort. Stronger painkillers are only partially effective.
8 – Physical activity severely limited. You can read and converse with effort. Nausea and dizziness set in as factors of pain.
9 – Unable to speak. Crying out or moaning uncontrollably – near delirium.
If you saw me out and about you'd likely peg me at a 6. My pain is almost never 6. 7-8 is typical. It took me a few years to train myself not to make "pain face." Sleep is always a problem. I often have times when language and cognition* are difficult as a direct result of my pain level. Sudden spikes in pain will knock me back a step or cause grunts or groans.
I cope: I sleep when I can and as much as I can. I distract with music, tv, socializing online, getting out in the world, hanging out with friends. I bounce by attention around online to increase the distraction. When it's really bad I have a drink or two, vape marijuana, or sleep. But alcohol and MJ don't reduce pain, they just make me care less. Other people have their own coping mechanisms because pain and coping are individual.
I've made a good life through a hell of a lot of work. But sometimes I still wonder what it would be like to be pain free. I can't imagine.
*I mistyped cognition, autocorrect fixed it, and I had to stare at the word a couple times before I confirmed that it was the correct word and said what I meant. This is not uncommon.
I cope: I sleep when I can and as much as I can. I distract with music, tv, socializing online, getting out in the world, hanging out with friends. I bounce by attention around online to increase the distraction. When it's really bad I have a drink or two, vape marijuana, or sleep. But alcohol and MJ don't reduce pain, they just make me care less. Other people have their own coping mechanisms because pain and coping are individual.
I've made a good life through a hell of a lot of work. But sometimes I still wonder what it would be like to be pain free. I can't imagine.
*I mistyped cognition, autocorrect fixed it, and I had to stare at the word a couple times before I confirmed that it was the correct word and said what I meant. This is not uncommon.
July 7, 2016
Mission: Very Difficult
My mission, whether I like it or not, is to get myself to the hospital lab for a morning blood draw. This may not seem like a big deal but I am not functional in the morning. I'm supposed to have the draw asap after waking, however it takes at least an hour for my brain to really come online. My waking time of 10am means I can avoid traffic, though.
Transportation is the main consideration. I live intentionally close to the main medical center, but driving oneself to the hospital is never a small matter. I know where to find street parking around the hospital but not at it. And parking garages are complicated. I'll probably take the bus, less to pay attention to that way.
The stress of trying to predict how I'll feel is one of the big issues in my life. I realized recently that I manage very well, considering this is an impossible task. I have become very good at setting and maintaining boundaries!
Transportation is the main consideration. I live intentionally close to the main medical center, but driving oneself to the hospital is never a small matter. I know where to find street parking around the hospital but not at it. And parking garages are complicated. I'll probably take the bus, less to pay attention to that way.
The stress of trying to predict how I'll feel is one of the big issues in my life. I realized recently that I manage very well, considering this is an impossible task. I have become very good at setting and maintaining boundaries!
June 4, 2016
Being a Professional Patient
I recently read a Vox article about the free patient labor involved in healthcare. This is why I sometimes call myself a Professional Patient: there is knowledge and skill involved, and a lot of time. I am my own medical home. My long-term chronically ill friends are almost all intelligent, informed, and excellent advocates for and managers of their care. Why? Because doing anything less leads to a "poor outcome."
Yesterday I spent about 1 1/2 hours thinking, researching, calling and emailing just to begin the process of diagnosing and treating a possible endocrine issue (thanks autoimmunity). I emailed my rheumatologist's nurse outlining my symptoms and asking for an endocrinology referral. Online patient portals make this simple action possible: no more calling, being routed by the switchboard, leaving a message that attempts to be coherent, then waiting a day for a reply. I can also email after hours when my thinking is clearer. I heard back that my PCP needs to generate all referrals, so the nurse forwarded my email to the PCP's office. My PCP is out on Fridays, though, so Monday is the earliest this message will be read.
I took a break. Realizing it will take weeks or months to actually see an endocrinologist, I called to schedule with my PCP. Except she's scheduled out for weeks, too. Oh, but her nurse practitioner had availability on Monday! So I see the nurse practitioner Monday, and perhaps will start the testing process then. In the meantime, I walked to the natural market and bought some thyroid calming herbs--maybe I'll get some symptom relief, and it could even be diagnostic. Tinctures taste disgusting, by the way.
The Vox article didn't mention the amazing work being done by nurses, which is a shame. Doctors are important but it's nurses who actually do the majority of the work. They talk to patients between appointments, get referrals, order labs, and smooth over insurance issues. Good nurses know how hard patients work and do their best to help. Hug the nurses, medical assistants and patients in your life.
Since this topic is kind of a bummer, here's a video of ducklings I saw in the park yesterday :)
Yesterday I spent about 1 1/2 hours thinking, researching, calling and emailing just to begin the process of diagnosing and treating a possible endocrine issue (thanks autoimmunity). I emailed my rheumatologist's nurse outlining my symptoms and asking for an endocrinology referral. Online patient portals make this simple action possible: no more calling, being routed by the switchboard, leaving a message that attempts to be coherent, then waiting a day for a reply. I can also email after hours when my thinking is clearer. I heard back that my PCP needs to generate all referrals, so the nurse forwarded my email to the PCP's office. My PCP is out on Fridays, though, so Monday is the earliest this message will be read.
I took a break. Realizing it will take weeks or months to actually see an endocrinologist, I called to schedule with my PCP. Except she's scheduled out for weeks, too. Oh, but her nurse practitioner had availability on Monday! So I see the nurse practitioner Monday, and perhaps will start the testing process then. In the meantime, I walked to the natural market and bought some thyroid calming herbs--maybe I'll get some symptom relief, and it could even be diagnostic. Tinctures taste disgusting, by the way.
The Vox article didn't mention the amazing work being done by nurses, which is a shame. Doctors are important but it's nurses who actually do the majority of the work. They talk to patients between appointments, get referrals, order labs, and smooth over insurance issues. Good nurses know how hard patients work and do their best to help. Hug the nurses, medical assistants and patients in your life.
Since this topic is kind of a bummer, here's a video of ducklings I saw in the park yesterday :)
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