or: How Fit Can a Cripple Get?
This year I had four goals to work on, and have made sufficient progress on two of them. So maybe I can only work on two life altering goals at a time. That is still pretty good, I think. Fitness was one that I failed miserably this year, and I cannot really afford that kind of mistake. You know?
I have successfully completed exercise programs before I was super sick, but was on the sick track and was not aware that all the little things were going to add up to big, systemic, life altering problems. It was hard, and I had failed at some before and since, but all the adults in the household were on the same workout bandwagon that one good time, and that helped a ginormous amount.
The pillars of fitness are more like spinning plates for sick folks like me. Figuring out what you need to work on can involve consulting with multiple doctors and maybe a physical/occupational therapist or two. I cannot afford to do exercises that may help one thing but make another worse. Habit is nearly impossible because one never knows when a flare is coming on, how long it will last, if a flare is coming on will activity activate it? Some flares you can still get some things done, but some flares are incapacitating. All of this can make progression nearly impossible.
Caring about my health is a no brainer when I spend my days trying to piece together enough strands of healthiness to get by each day. I find that I am much more aware and connected to how my body is doing every day that non-sick/able-bodied folks. They seem to be able to get through a day without checking in with their bodies and their health. Hell, I have to check each day to see if I have a doctor appointment!
How do I even measure fitness in this physical miasma? Will having stronger, tones muscles give me the type of health I will need to fight my health issues as I age? Heart healthiness always sees good, but sometimes stairs wind me and bad balance days can make a simple, one story staircase a nightmare of risk and cost benefit analysis. Well, I am going to start at just trying to do something and go from there.
So, as you can see, returning to a good level of fitness is not going to be an easy task. I am doing what I can to remove obstacles I have put in my own way, like smoking and a sense of futility. But I think it is going to take a lot more than that. Getting more fit is going to be one of the things on my New Year's resolutions. Again. But I think I have a better shot at it this time. Hell, my smoking is... well, I will tell you about my smoking here soon. Last year's list is going out 2 for 4, so I call my odds pretty good, maybe even... even.
I am PatientC. Welcome! This is a disability oriented blog where issues and intersection are discussed at my whim and with varying degrees of humanity, snark, and intensity. Content can be adult at times, farcical at others.
Showing posts with label IBS. Show all posts
Showing posts with label IBS. Show all posts
Thursday, December 5, 2013
Wednesday, November 6, 2013
PatientC Manifest
Welcome to me: the me before I even get up, the base physical me, the challenges in my day, and what I conquer, compromise, and coddle to get to you, Dear Reader.
There is the whole lupus/SLE thing. Because of two disagreeing rheumatologists, I am not currently on Plaquenil, which did help somewhat. This mess brought to you by a gutless GP (now out of the country, I think) that refused to override one of the two rheumys. This has been a cluster fuck since it started and I am just not surprised by crap like this anymore. We are treating some of the pain brought on by lupus, and I go take steroids during flares. Note: this should get taken more seriously now that my brother has been affirmatively diagnosed with lupus/SLE as well.
The fibromyalgia thing came along later, and I take an anti-seizure med to calm down the fibro spots and the electric pain that runs up and down my back (I envision my spine & back as being a big Tesla coil type thing when this pain is uncontrolled.)
These two alone can cause brain fog/cognitive dysfunction, fatigue, loss of memory, boatloads of pain, et al. They, and some of the following, are exclusionary diagnosis, which is a hell no on should ever suffer.
Even later came the irritable bowel syndrome/IBS thing. This is even more of a social life killer than the other two. While all three can have flares (and sometimes set each other off, what fun!), IBS flares usually keep me within ten feet of an accessible bathroom. So it is also horribly life changing but one of the more difficult things to talk about. USians are so weird about bathroom habits, we do not even have the language to discuss this well. I take an anti-spasmodic for this, to keep my guts from churning too fast.
In between the last two we found carpal tunnel syndrome. I had open carpal tunnel surgery last year, and while recovery was difficult (the family made it much easier than it could have been for me), the recovery from it was complete. Since then it has gotten worse in my left hand, and we found ulnar entrapment in both my hands. As this stuff progresses, I will need to get opened up again.
About five years ago we found bulging/herniated disks in my back. These have now gotten worse and I just found out that there is now spinal stenosis and arthritis happening in my spine. I have started using a TENS unit to manage that pain. It works, but since it does not do anything for the problem causing the pain, it comes back after use: a day or two if I am taking it easy, later that day if I am trying to get stuff done. Next week I will have steroids injected into my spine to try to manage this more effectively and help with the hyper-mobility and hypo-mobility that seem to be associated with the diagnosed problems (hopefully they are not new ones!).
All of that mess means that I take both pain meds and a muscle relaxer. They help, they do. No day is pain free - no day will likely ever be pain free. That is not even the goal anymore. This past year I have put on some weight. Moving hurt, I started moving less. When I moved less, I burned less calories. This situation has actually caused better pain management, so... umm... silver lining? Not really, but I am glad to do something about it.
Some genius decided I was depressed. While depression is often a valid diagnosis, I still argue that I am angry, grieving, in constant physical pain, downright sad... I still view depression as unreasonable sadness, morose without source. I am taking an mild anti-depressant anyhow, because if you do not, then they see you as "non compliant" and that greatly changes how every doctor sees you and treats you. Until they have little time capsules you can swallow and go back and make good diagnosis early, this will probably remain a problem of various intensity.
I am also avoidant, which combined with the lupus/fibro/IBS means that stupid social bullshit literally makes me sick. Stress can throw me into Flaresville if managed badly or unmanageable. I resent the hell out of that, but my resentment does not, can not make it any less true. I internally debate if it is ableist to get shitty with me for protecting my own mental health in cases of social stupidity. Take that definition with a grain of salt, though - it is not as rare as you might think to be a avoidant public personality. **cough** I could explain that, but I feel like I already screwed up telling some folks that I am avoidant in the first place. I have a med to take when I am getting too stressed, although it has a sedating quality, so I try to avoid it.
I think I am almost done.
I have been hypoglycemic for two decades, controlled through diet.
I have a handful of allergies that make medical life difficult. One of them causes anaphylactic shock and can cause death all by itself.
I take vitamins, but have to take Vitamin D3 for a deficiency and I take a separate calcium supplement to help guard against the years of steroids I will have taken should I be lucky enough to grow old.
I have an unexplained spot on cranial MRIs that we stopped monitoring after four or so years of watching it.
I had a full (minus one ovary) hysterectomy due to ovarian cysts and unmanageable chronic primary dysmenorrhea (super awful menstrual syndrome). We did not know I likely had an illness that, when treated, could have made this more manageable.
I had my tonsils removed as an adult, because we did not understand why I was getting step/not strep six times a year. We did not know I likely had an illness that, when treated, could have made this more manageable. Again.
I used to have a handful of kidney/UTI trouble. I almost lost a kidney in grade
school because I did not run the fever they expected and so no one treated me. My low body temp/fevers plagues me even still.
Oh, and there is the TMJ thing, which I only notice when it is really bad. Couple that with really soft teeth, a really dry, small mouth, and you have a recipie for disaster. Anyone that tells you that dental insurance is not as necessary as health coverage is lying through their... whatever. On the up side, my dentist is all kinds of awesome. He makes sure that everyone in the office clinic treats all of us patients like we have cadillac plans. They are amazing. Which is good, because whenever I can use a dentist, I go to the dentist. Senator Bernie Sanders is the only person with visibility talking about the dental catastrophe that is happening in the US and working to help it.
And the migraines. Wow, the migraines sometimes...
Welcome to my body. This is all before I get out of bed every day. Make no mistake: this is not a litany of woes. Well, maybe it is, but you do not see a single "poor me" or anything like that. This post is not a complaint, it is just what I deal with every damn day.
(Wow, that was longer than I thought it would be. One day, maybe, I will go ahead and tell you how I got here, to you, Dear Reader.)
There is the whole lupus/SLE thing. Because of two disagreeing rheumatologists, I am not currently on Plaquenil, which did help somewhat. This mess brought to you by a gutless GP (now out of the country, I think) that refused to override one of the two rheumys. This has been a cluster fuck since it started and I am just not surprised by crap like this anymore. We are treating some of the pain brought on by lupus, and I go take steroids during flares. Note: this should get taken more seriously now that my brother has been affirmatively diagnosed with lupus/SLE as well.
The fibromyalgia thing came along later, and I take an anti-seizure med to calm down the fibro spots and the electric pain that runs up and down my back (I envision my spine & back as being a big Tesla coil type thing when this pain is uncontrolled.)
These two alone can cause brain fog/cognitive dysfunction, fatigue, loss of memory, boatloads of pain, et al. They, and some of the following, are exclusionary diagnosis, which is a hell no on should ever suffer.
Even later came the irritable bowel syndrome/IBS thing. This is even more of a social life killer than the other two. While all three can have flares (and sometimes set each other off, what fun!), IBS flares usually keep me within ten feet of an accessible bathroom. So it is also horribly life changing but one of the more difficult things to talk about. USians are so weird about bathroom habits, we do not even have the language to discuss this well. I take an anti-spasmodic for this, to keep my guts from churning too fast.
In between the last two we found carpal tunnel syndrome. I had open carpal tunnel surgery last year, and while recovery was difficult (the family made it much easier than it could have been for me), the recovery from it was complete. Since then it has gotten worse in my left hand, and we found ulnar entrapment in both my hands. As this stuff progresses, I will need to get opened up again.
About five years ago we found bulging/herniated disks in my back. These have now gotten worse and I just found out that there is now spinal stenosis and arthritis happening in my spine. I have started using a TENS unit to manage that pain. It works, but since it does not do anything for the problem causing the pain, it comes back after use: a day or two if I am taking it easy, later that day if I am trying to get stuff done. Next week I will have steroids injected into my spine to try to manage this more effectively and help with the hyper-mobility and hypo-mobility that seem to be associated with the diagnosed problems (hopefully they are not new ones!).
All of that mess means that I take both pain meds and a muscle relaxer. They help, they do. No day is pain free - no day will likely ever be pain free. That is not even the goal anymore. This past year I have put on some weight. Moving hurt, I started moving less. When I moved less, I burned less calories. This situation has actually caused better pain management, so... umm... silver lining? Not really, but I am glad to do something about it.
Some genius decided I was depressed. While depression is often a valid diagnosis, I still argue that I am angry, grieving, in constant physical pain, downright sad... I still view depression as unreasonable sadness, morose without source. I am taking an mild anti-depressant anyhow, because if you do not, then they see you as "non compliant" and that greatly changes how every doctor sees you and treats you. Until they have little time capsules you can swallow and go back and make good diagnosis early, this will probably remain a problem of various intensity.
I am also avoidant, which combined with the lupus/fibro/IBS means that stupid social bullshit literally makes me sick. Stress can throw me into Flaresville if managed badly or unmanageable. I resent the hell out of that, but my resentment does not, can not make it any less true. I internally debate if it is ableist to get shitty with me for protecting my own mental health in cases of social stupidity. Take that definition with a grain of salt, though - it is not as rare as you might think to be a avoidant public personality. **cough** I could explain that, but I feel like I already screwed up telling some folks that I am avoidant in the first place. I have a med to take when I am getting too stressed, although it has a sedating quality, so I try to avoid it.
I think I am almost done.
I have been hypoglycemic for two decades, controlled through diet.
I have a handful of allergies that make medical life difficult. One of them causes anaphylactic shock and can cause death all by itself.
I take vitamins, but have to take Vitamin D3 for a deficiency and I take a separate calcium supplement to help guard against the years of steroids I will have taken should I be lucky enough to grow old.
I have an unexplained spot on cranial MRIs that we stopped monitoring after four or so years of watching it.
I had a full (minus one ovary) hysterectomy due to ovarian cysts and unmanageable chronic primary dysmenorrhea (super awful menstrual syndrome). We did not know I likely had an illness that, when treated, could have made this more manageable.
I had my tonsils removed as an adult, because we did not understand why I was getting step/not strep six times a year. We did not know I likely had an illness that, when treated, could have made this more manageable. Again.
I used to have a handful of kidney/UTI trouble. I almost lost a kidney in grade
school because I did not run the fever they expected and so no one treated me. My low body temp/fevers plagues me even still.
Oh, and there is the TMJ thing, which I only notice when it is really bad. Couple that with really soft teeth, a really dry, small mouth, and you have a recipie for disaster. Anyone that tells you that dental insurance is not as necessary as health coverage is lying through their... whatever. On the up side, my dentist is all kinds of awesome. He makes sure that everyone in the office clinic treats all of us patients like we have cadillac plans. They are amazing. Which is good, because whenever I can use a dentist, I go to the dentist. Senator Bernie Sanders is the only person with visibility talking about the dental catastrophe that is happening in the US and working to help it.
And the migraines. Wow, the migraines sometimes...
Welcome to my body. This is all before I get out of bed every day. Make no mistake: this is not a litany of woes. Well, maybe it is, but you do not see a single "poor me" or anything like that. This post is not a complaint, it is just what I deal with every damn day.
(Wow, that was longer than I thought it would be. One day, maybe, I will go ahead and tell you how I got here, to you, Dear Reader.)
Friday, June 7, 2013
If Self Improvement is Masterbation...
I have not written much about me personally lately. I shy away from that sort of thing when I am stressed. So here is what is going on with me and mine for the folks that are interested. All of this is happening with tons of help from the family, particularly the Menfolk. I would still be splashing in a miasma of good intent, stalled efforts, and drama without their support.
So if I get through today the same, this will be my first week at under 12 cloves a day. Or 12 cigarettes or under, but I hope for the former. While the eCigs are a wonder and I am using them frequently, I do think I am cutting down on my overall nicotine intake. I do not know if I will keep moving on nicotine reduction once I have the cigs kicked. Nicotine itself is not a health concern for me right now, and I am not sure that it should be one.
"Once I have the cigs kicked" - I was not sure I would ever seriously use those words, but I just did. Woot!
My avoidance is not so bad when I stay in contact with people that reciprocate my caring and love for them. So I am using my emergency med less. But I prefer to take it when people stress is building and neither practical methods (STFU, GTFO, etc...) nor internal coping mechanisms are cutting it. If you are familiar with autoimmune illnesses like lupus/SLE, you know that other people's bullshit can literally make us lupies physically ill by stressing us into Flare's Ville. I do not talk about that much because people can be awful, but fuck it: that is the state of things.
For about a year, with lupus in full effect but we were still unaware that it was there: I was stressing myself into the ER or a hospital room about once a month with a combination of physical and emotional stress. I just cannot let people do that to me anymore - what if the next flare convinces my immune system that my kidneys have become enemies and should be destroyed? I had to kick the part of myself that comes from abuse and neglect and remind her that she and I do not take shit anymore.
I have cut back on my caffeine, especially Red Bull. Now, I still drink a lot of it, there was just plenty of room for improvement. That and more generally weight reduction will not be a focus until the smoking thing is done, before the end of the year I hope.
We are starting the Medical Mystery business that is my life back up again. Hopefully we can get some answers on the stuff that is not under the umbrella of lupus/SLE or fibro.
We are going to do more meditation at home and plan on going to more open sittings and the stuff we can afford to do with the local Buddhist group we met this spring.
I am working on writing more and actually putting it out there. I am getting better at actually posting what I write when I write it. I am also making time to write whenever I have the bug instead of letting it wait 'til I get back to my desk.
So, what sort of self improvement are you engaged in now? Is it working? Thanks for stopping by, I appreciate it!
 |
| Umbra does not care if this post gets finished. |
So if I get through today the same, this will be my first week at under 12 cloves a day. Or 12 cigarettes or under, but I hope for the former. While the eCigs are a wonder and I am using them frequently, I do think I am cutting down on my overall nicotine intake. I do not know if I will keep moving on nicotine reduction once I have the cigs kicked. Nicotine itself is not a health concern for me right now, and I am not sure that it should be one.
"Once I have the cigs kicked" - I was not sure I would ever seriously use those words, but I just did. Woot!
My avoidance is not so bad when I stay in contact with people that reciprocate my caring and love for them. So I am using my emergency med less. But I prefer to take it when people stress is building and neither practical methods (STFU, GTFO, etc...) nor internal coping mechanisms are cutting it. If you are familiar with autoimmune illnesses like lupus/SLE, you know that other people's bullshit can literally make us lupies physically ill by stressing us into Flare's Ville. I do not talk about that much because people can be awful, but fuck it: that is the state of things.
For about a year, with lupus in full effect but we were still unaware that it was there: I was stressing myself into the ER or a hospital room about once a month with a combination of physical and emotional stress. I just cannot let people do that to me anymore - what if the next flare convinces my immune system that my kidneys have become enemies and should be destroyed? I had to kick the part of myself that comes from abuse and neglect and remind her that she and I do not take shit anymore.
I have cut back on my caffeine, especially Red Bull. Now, I still drink a lot of it, there was just plenty of room for improvement. That and more generally weight reduction will not be a focus until the smoking thing is done, before the end of the year I hope.
We are starting the Medical Mystery business that is my life back up again. Hopefully we can get some answers on the stuff that is not under the umbrella of lupus/SLE or fibro.
We are going to do more meditation at home and plan on going to more open sittings and the stuff we can afford to do with the local Buddhist group we met this spring.
I am working on writing more and actually putting it out there. I am getting better at actually posting what I write when I write it. I am also making time to write whenever I have the bug instead of letting it wait 'til I get back to my desk.
So, what sort of self improvement are you engaged in now? Is it working? Thanks for stopping by, I appreciate it!
Monday, May 20, 2013
Is there Cake? I Was Told...
Or: Is diagnosis fatigue a thing? I do not want another thing...
Do not be surprised if posts that are not particularly timely start showing up as I attempt to clean up my drafts with a “put it up or dump it” eye. Except the Angel Pillows piece. It makes me shudder, but I need to do it. Sometime. Dammit.
I have to do something to not feel useless sitting in my office chair to re-situate my SI Joint Dysfunction. That mostly looks like doing nothing and can rapidly deteriorate into actually doing nothing. Well, or what other folks might call nothing but I call Internet Rabbit Hole/Tabspolsion Learning Time!
I recently realized that after the first couple diagnosis I received, after the first couple of dozen prescriptions and recommendations and all of that - I stopped being Super Learning Gimp. I did not just quit caring, but it got kind of numb. Whatever. What does this mean? What do I have to do? What do I have to take? Will it get better?
Is there like, cake, for people that get long lists of unspecific symptoms diagnosis? Because I am really hoping there is cake because this fucking sucks. I did plenty of testing, where is the cake?
Come home and say “looks like they think I have blargity blarg.” They ask what they can do at home, because my family is awesome, but they kind of get the blank slump I get now too. Then we just kind of sit and commiserate in the suck for a little bit and move on with this new word in our lives.
Ask the pharmacist to check for interactions because I can fucking care less at this point. Sure.
Wait for the referral call for the specialist which will do one of two things: tell me they cannot help me and bounce me back to my GWP, or start running tests and writing more Rxs and suggesting life changes. Whatever. All of which I will heed, it is just rare to care about it anymore. Or maybe not care, but have an emotional reaction other than the mild cry I am sure to have that night.
Which is why I hardly ever mention the recent (months ago) IBS thing that came up. Yeah, my body party was not rocking enough, you know? Heh. And I lost coverage just as that was getting started, so I have an Rx and some advice on life changes and that’s it. Other than what it does to my every fucking day and life in general, it’s actually kind of hard to care about it specifically, at this point, you know?
Seriously, where is the cake?
What is this morning? Lupus flare? Fibro spots giving me daggers today? Tesla coil -esque electric charges up my back? Joints upset over the lingering weather pressure border turning my Human Barometer status into a nightmare? Can I stay more than 15 feet away from the bathroom today? This week? Do I have spatial coordination today? Will I need my cane or my chair if I have to go out? Can I go out if I have to go out? What is the definition of “must” today? How are the headaches? Big today?
What is an adequate day under these standards?
Take up the standard "dress to play even if you know you will be on the bench." Get dressed every day, because not is a tacit acknowledgement that the world spins without you, and even on days you are okay with this fundamental fact, other people expect you to be as not okay with it as they are with the idea regarding themselves.
Fucking hellooooo! Where is the damn cake?
Friday, June 8, 2012
Where Have I Been?
Hallo. It has been a while, but you and this blog have never been far from my mind. Unfortunately, all of my current drafts of pieces to share with you look like trash right now. I have been quite distracted. The kids have needed help. Minion One and I are both dealing with new diagnosis (and the same med for each of us!). Minion Two's birthday was last week! I have been sick (surprise!). It has been busy and disorganized here. Sigh.
This month the Husband and I will celebrate our sixteenth wedding anniversary. Woot! And we have been together twenty. Suck it, everyone that thought (and especially those that said) we would not last!
This year our poly family has been in our current configuration for ten years. More woot!
I almost have the silver hair I have wanted since junior high! After salons told me they could not do it, it could not happen. After a beautician that was a family friend said she could do it but never did. After all that, my bald Boyfriend amalgamated a bunch of instructions and anecdotes. We got the tools and the chemicals, the bleach (although they call it "lightener" now) and the wash. The process was long and hard to sit through. The Boyfriend was nervous. I was anxious. The wash took everywhere but where I needed the "lightener" the most. So one more sitting and I will have all silver hair. Down to my ass silver hair will be mine! Oh, yes, it will be mine...
So it looks like I have IBS (irritable bowel syndrome). I am on a med I have to take before I eat, and other than some diet advice, I am kind of floundering. Thanks to a walking, talking personification of awesome on G+, I feel more capable of dealing with this. So thanks a bunch!
This lupus/fibro thing has been kicking my ass lately. I wasted through part of the winter and then put that weight plus ten pounds back on super quickly.
We are battening down the hatches for the end of the school year. I have put together a earned/pledged privilege system. And I am making plans to do more things with the Minions, rather than let the summer slip by without doing something sometimes. Movies, video games together, working in the yard, napping - I want together time before they are too busy for their 'rents, you know?
Toe shoes - they rock. I lucked into some, and I will be talking about them.
I will be talking about the games that I have played recently, all the political stuff going on and how it may change lives like mine and my family. There is so much going on and I want to share it with you.
This month the Husband and I will celebrate our sixteenth wedding anniversary. Woot! And we have been together twenty. Suck it, everyone that thought (and especially those that said) we would not last!
This year our poly family has been in our current configuration for ten years. More woot!
I almost have the silver hair I have wanted since junior high! After salons told me they could not do it, it could not happen. After a beautician that was a family friend said she could do it but never did. After all that, my bald Boyfriend amalgamated a bunch of instructions and anecdotes. We got the tools and the chemicals, the bleach (although they call it "lightener" now) and the wash. The process was long and hard to sit through. The Boyfriend was nervous. I was anxious. The wash took everywhere but where I needed the "lightener" the most. So one more sitting and I will have all silver hair. Down to my ass silver hair will be mine! Oh, yes, it will be mine...
So it looks like I have IBS (irritable bowel syndrome). I am on a med I have to take before I eat, and other than some diet advice, I am kind of floundering. Thanks to a walking, talking personification of awesome on G+, I feel more capable of dealing with this. So thanks a bunch!
This lupus/fibro thing has been kicking my ass lately. I wasted through part of the winter and then put that weight plus ten pounds back on super quickly.
We are battening down the hatches for the end of the school year. I have put together a earned/pledged privilege system. And I am making plans to do more things with the Minions, rather than let the summer slip by without doing something sometimes. Movies, video games together, working in the yard, napping - I want together time before they are too busy for their 'rents, you know?
Toe shoes - they rock. I lucked into some, and I will be talking about them.
I will be talking about the games that I have played recently, all the political stuff going on and how it may change lives like mine and my family. There is so much going on and I want to share it with you.
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