Category: chronic pain

September is Pain Awareness Month #PAM16

Posted on by Grayson
There is irony in the timing of my writing this in my non-flattering state you see above.
It’s currently Wednesday, August 31, close to 9 pm Central Time. I was fine all day – really productive and got some self-love stuff done even. I made the mistake of having a full glass of milk around 4:30 pm… then around 7:30 pm, my pain went straight from a 2 to a 7. Extra medications, my tens unit, and ice barely brought it down at all.
 
Oh, the pain.
Well, September is Pain Awareness Month! It was started in 2001 with the help of a number of organizations coming together. You can learn more about the history via this PDF.
According to Johns Hopkins, 100 million Americans deal with chronic pain… my guess is the real number is slightly higher than that since the CDC states that 117 million Americans as of 2012 had some sort of chronic illness or disability. You can find some additional facts, though they’re from 2007, over at Health Central.
 
What can you do to raise awareness or help?
Learn more about and share People with Pain Matter, a new initiative from the US Pain Foundation (I shared them on Medium).
Share your story, whether it’s one blog post or a daily account on social media. Make sure to use the tags: #PAM16 #PainAwarenessMonth #USPain #IAmAPainWarrior (Optional: #30DayChallenge #PeopleWithPainMatter). Make sure you’re not being ableist and utilizing tags like #PatientsNotAddicts though. That just hurts other patients with genetic predispositions, trauma, and other pain. Addicts are still humans – and still patients. Don’t be a jerk.
If you’re going to tweet/post/IG your pain, check out the 30 Day Challenge for themes and ideas. The US Pain Foundation Facebook page also has a ton of information and will have a lot of new stuff going up this month.
Speak out against organizations that try to trademark and profit off of our pain by eliminating other organizations they don’t like with said trademark. (Confused? Catch up here.)
You can add a Twibbon to your Facebook or Twitter profile photo, like I’ve done above, here.
Remember that it’s also Animal Pain Awareness Month so if you have a spoonie pet, share their story, too!
And, please, be kind to yourself this month regarding your pain. It’s okay to do less or to say no to things in order to take care of you. I love you and you need to be safe.

 

National Pain Strategy #ISpeakForPain

Posted on by Grayson
A few months ago, the Office of the Assistant Secretary for Health at the U.S. Department of Health and Human Services released a National Pain Strategy. This strategy provides guidance on developing ways to measure pain and its management, improving care surrounding pain, and increasing public awareness of pain in order to destigmatize it.
As pain patients, we know that pain affects much of our lives as well – something that others aren’t necessarily always in tune with. This strategy would help to recognize and promote that to those currently not in the know.
This would also help to lower the people who are on opiates unnecessarily and help them to gain access to other pain management fitting their pain. It is, after all, a part of the initiative to lower opiate abuse.
The National Pain Strategy is a first-of-its-kind blueprint for improving chronic pain care in America, that increases research of pain treatments, medical training for clinicians, and awareness of chronic pain as a disease of epidemic proportions. Without an outcry from patients and advocates, NPS may not be implemented or funded at all. The chronic pain epidemic must be addressed immediately by fully implementing and funding the NPS.
The National Fibromyalgia and Chronic Pain Association, along with The Consumer Pain Advocacy Task Force, have combined forces to create a petition on the White House petition site in order to ask for this to pass.
We need 100,000 signatures by August 12. As of this morning, that means we need just shy of 92,000 signatures in ten days.
I know we can do this if we all sign and share.
What can you do to help?
  • Sign the petition here and make sure to share on social media (bonus points for using tags like #ISpeakForPain!)
  • Write a blog post or record a video about it and share that!
  • Use the photo I’ve created below to share on Insta

 

Ensuring that this passes will make the world better and less painful for us. Let’s do what we can to make it so.

 

Book Review: How to Live Well with Chronic Pain & Illness by Toni Bernhard

Posted on by Grayson
For Christmas, my husband’s amazing aunt got me Toni Bernhard‘s latest book How to Live Well With Chronic Pain and Illness: A Mindful Guide. I’ve enjoyed Toni’s previous books as well as her pieces on various websites like Psychology Today.

 

She has been a huge inspiration for me living with chronic illness. This book just takes the admiration I have for her further.
Courtesy of ToniBernhard.com
This book interestingly balances information for those of us who are already practicing mindfulness and those who are new to the subject, just as it balances information for those of us who have been ill a long time versus those new to the chronic life.

 

Toni has done an amazing job of capturing so many of the difficulties we face with a chronic illness, from being ill at a young age to self-loathing and self-blaming to how that affects our relationships with others and our caregivers.
It’s truly a must-read for anyone with a chronic illness – or for our loved ones. I’ll probably be bugging T to read this to get his thoughts as well as to see how it helps him to understand both his own and my illnesses.

 

There is so much that I can say and yet the words escape me so, like I usually do at the end of my reviews, I’d like to share some quotes from Toni that really stuck out for me.
When we become aware of the mental and emotional challenges that accompany chronic illness, not only is it easier to adjust to and accept our news lives, but we’re much more likely to make skillful decisions and wise choices along the way. (3)

 

I’ve learned that the burden is on me to make my medical condition visible to family and friends, especially because my chronic illness, as is often the case, is invisible. If I don’t make the effort to educate them, their expectations of me may be way out of line with what I can handle. (8)

 

Mindful awareness of your thinking patterns is instructive because, without mindfulness, when you’re caught up in unpleasant thoughts or emotions, you’re likely to feel as if they’ll last forever. (17)

 

It’s easy to go beyond our limits when we’re chronically ill, partly because adrenaline kicks in and convinces us that we’re doing fine. Unfortunately, when that adrenaline wears off, a “crash” is invariably in sight. (18)

 

Allowing them to help when you’re struggling with your health makes them feel less helpless in the face of the new challenges in your life. It can mean a lot to someone to be able to aid a friend or family member who is struggling with his or her health. (25)

 

Sticking with the example of feeling irritated at physical pain, the way to understand and accept what’s going on in your mind is to gently acknowledge that irritation is present, and then incline your mind toward kindness and compassion for yourself. (74)

 

To reiterate a point from the previous chapter, physical discomfort has three components: the unpleasant physical sensation itself, the emotional reaction to it, and the thought patterns that are related to the first two components. (77)

 

Mindfulness meditation is an excellent tool for seeing that you need not believe in or act upon the ever-changing array of thoughts and emotions that arise in the mind. But if these unresolved issues are part of your deeply embedded personal psychological history (as opposed to being the thoughts and emotions that typically come and go for everyone during meditation, such as a wave of sadness or worry), they can stick in your mind and increase in intensity, leading to anxiety, anxiousness, and fearfulness. (92)

 

Several young people have told me that they’ve been openly challenged when they park in a disabled spot, even though they have the required placard or sticker. (By contract, no one has ever challenged me.) If a stranger is rude to you in this fashion, the best response is to acknowledge to yourself that you feel hurt, take a deep breath, and then immediately turn your attention to taking loving care of yourself. (140)

 

In addition to the challenges they share with the person in their care, caregiver face their own set of stressors. They must live with the frustration and helplessness of not being able to make their loved one better. They’ve been thrust into the role of patient advocate in the medical system, a role for which they have neither training nor expertise. They often have to take over the running of the household. Finally, they’re the ones who see their loved one at his or her very worst. (195-196)

 

 

#ChronicLife Wrap Up

Posted on by Grayson

A few weeks back, Britt aka the Hurt Blogger had an idea based off a conversation – to live tweet 48 hours of her #chroniclife.

Before I get into anything, I want to share a few links – you can check out Britt’s tweets here and tweets from other peeps like myself here. You can also read Britt’s wrap up here and check out others she’s linked to. You can check out the ongoing tweeting here.

Live tweeting my illness related issues was very telling. For me it opened up things I was repressing. It’s one thing to have your rheumatologist tell you that you’re banned from yoga and have to step back to water therapy, but it’s another thing to stop being in denial and realize how very right she is.

I think we spend so much of our time censoring ourselves because what we want to say isn’t popular or polite. Or, as many found during this exercise, we feel whiny when we share about our pain. We think it makes us complainers and nobody likes complainers!

One of the reasons I love my fitbit is that it shows me when pain interrupted my sleep #ChronicLife pic.twitter.com/N87D5NR1Vg
— Kirsten Schultz (@Kirstie_Schultz) February 2, 2015

Personally I learned a lot about myself. I learned that I ignore a LOT of pain in my day to day life. Obviously that’s exacerbated with my hip issues right now, but still. I was more aware of the pain because I was more focused on it. It was honestly a mindfulness exercise for me. It gave me an opportunity to check in with my body in a way I hadn’t done in a LONG time.

Dat #stillsdisease rash though #ChronicLife – at least it doesn’t itch at the moment! pic.twitter.com/gFzMQoTxA9
— Kirsten Schultz (@Kirstie_Schultz) February 3, 2015

I shared a lot about my morning routine when I’m feeling okay-ish or when I don’t have a choice.

How am I gonna tame this with angry hands?!? #ChronicLife pic.twitter.com/T7TUnl8uQ6
— Kirsten Schultz (@Kirstie_Schultz) February 3, 2015

 

Now I have to figure out what to wear, taking into account pain levels, weather (esp humidity & cold), and today’s activities #ChronicLife
— Kirsten Schultz (@Kirstie_Schultz) February 3, 2015

 

With a real feel of 9 and snow on the way, I’ll need to dress warm but not too constrictive on my joints #ChronicLife pic.twitter.com/fLW3Ei7aFx
— Kirsten Schultz (@Kirstie_Schultz) February 3, 2015

 

Now on to makeup, because I have a PCORI meeting to start off my day and don’t want to show off rashes #ChronicLife pic.twitter.com/dvGVHZzEhD
— Kirsten Schultz (@Kirstie_Schultz) February 3, 2015

 

First to smooth out my psoriasis on my face and to reduce redness #ChronicLife pic.twitter.com/wEgobAbZom
— Kirsten Schultz (@Kirstie_Schultz) February 3, 2015

 

Now since all that erases color in my face, I have to replace some and actually wear blush! #ChronicLife
— Kirsten Schultz (@Kirstie_Schultz) February 3, 2015

 

And now I look normal! Well kinda… Haha #ChronicLife pic.twitter.com/43uW9XvNwN
— Kirsten Schultz (@Kirstie_Schultz) February 3, 2015

I didn’t realize just how much energy I spend on trying to look normal. Most days it honestly doesn’t matter, but that one it did. I had a meeting to discuss applying to serve on a PCORI panel which was well timed with this experiment.

Writing this way, using a stream of consciousness, allowed me to share a lot of things I don’t normally share, like pictures of my bra… which got furiously retweeted despite the lack of boobs in said bra.

The only bra that’s going to work with my shoulder pain is more for show than support #ChronicLife pic.twitter.com/AbvPr4NhfG
— Kirsten Schultz (@Kirstie_Schultz) February 3, 2015

As someone who deals with moderate depression and general anxiety disorder as well, I was able to share a lot more on those issues than I have in the past. I hope to continue to shed light on how my chronic illnesses and upbringing affect my mind.

It’s interesting just how many people can be judgmental about mental illness, even those who also suffer with it.

I also got to share what keeps me moving when I’m feeling crummy.

Aaannddd coming home to happy “omg mom is home!?!!?!” squeaks from this lot #ChronicLife pic.twitter.com/hZDmCRXg7e
— Kirsten Schultz (@Kirstie_Schultz) February 3, 2015

 

Only time I kneel down for a long time – playing with my buddies! This us Gus Gus, my lil bff #ChronicLife pic.twitter.com/vfimdgLvDc
— Kirsten Schultz (@Kirstie_Schultz) February 4, 2015

 

The piggies are having problems #cagecleaningnight #quietestwithme #ChronicLife pic.twitter.com/WwUCKmOTNW
— Kirsten Schultz (@Kirstie_Schultz) February 4, 2015

 

I hit all my goals today! And even ended up 700 calories under… Give or take. #chroniclife pic.twitter.com/6UPztK2YUV
— Kirsten Schultz (@Kirstie_Schultz) February 4, 2015

And thanks to my Fitbit display, everyone knows what I weigh. I oddly don’t care anymore haha.

This exercise brought up a lot more feels than I thought it would honestly. It both brought me together with others living with chronic illness, but also made me realize just how much of an individual I am. That’s not necessarily a bad thing, but interesting.

My new job has changed some of the things I’ll write about in the future, just like this experiment has. I hope to bring more research oriented information in addition to talking more about my depression, anxiety, and fears.

I want to start taking one day a week to tweet out information related to #chroniclife. Everyone hates Mondays, so maybe I’ll start there.

I would encourage you to join the #chroniclife movement and see how much you’ll learn about yourself.

Light: A Window to Pain in the Brain?

Posted on by Grayson

I have GOT to tell you guys about this new study seeking funding… with a little back story of course!

I grew up out in Eugene, Oregon, home of the Oregon Ducks. It’s a great place – very progressive and full of actual, real hippies. Side note: I’m actually super stoked to try going out there for my ten year reunion in a few years.

ANYWAY, one of my friends from high school works in the healthcare industry. She knows Doctor Omar Halawa at the Oregon Health and Science University, who just happens to be working on this fascinating new study focused on chronic pain, specifically fibromyalgia.

You can read the details above, but basically here’s the lowdown: fibromyalgia patients have been found to be a lot more sensitive to light than normal peeps. This study is going to utilize results from that study to see if changes in light can affect pain centers in the brain, and they’ll measure this using a fMRI (functional MRI).

This is fantastic news for anyone dealing with chronic pain, as this could have HUGE implications for us. It’s also super news for us fibro patients, because the medications used to treat fibro don’t work for everyone and can have some funky side effects. I just found out the med I’m on can be a depressant – they gave a girl with a history of anxiety and depression a depressant!!!

Sigh. At least it’s working okay for me. I digress.

My friend got me in touch with Dr. Halawa and he was kind enough to answer some of my questions on this study:

Briefly, chronic pain is a huge stigma in our medical system and society at large. If someone gets this diagnosis they’re often labeled as “weak” “narcotic seeking” “whiney”. What supports this erroneous view is that our current diagnoses aren’t able to “find pain”. For example, if you image a patient’s lower back and find nothing pathological you imply to them that the pain is “in their head”. This is harmful to the patient as they start to feel that their pain is a character flaw and often become isolated/hopeless. The reality, though, is that most chronic pain conditions are a malfunction in the neurocircuitry in the brain and spinal cord that we can’t see with conventional imaging.
Our hope with this study is that we will be able to detect this abnormal/sick nervous system using functional MRI and light.

These doctors actually get it, so I figure we need to do what we can to help them help us, right? There are 24 days left for Dr. Halawa and his colleagues to raise the $12k needed to complete this study. If you’re in the position to donate, please do so here. If you can’t, please try to share this so that others can try to help.

Diversions from pain!

Posted on by Grayson

Pain sucks. It really, really, REALLY sucks.

My back isn’t really feeling better, can you tell?

Anyway, I’ve had roughly 18 years experience trying to detach from pain. Sooo here are some of my favorite diversions when I feel like death! Or just what I like to do with some of my days!

Why?

Because it’s midnight and I have heartburn and am not sleeeepy!

Enjoy this horrendously long list!

 

  • Mahjong
  • Refreshing Twitter/Facebook 90 times in 5 minutes
  • Playing Lego Harry Potter. Gamefly might not get it back.
  • Playing Mario. But the Wii Super Mario is super hard 🙁
  • Looking at silly tumblr pictures
  • Dinosaur Comics
  • The Adventures of T Rex from Dinosaur Comics
  • A Softer World
  • Adele
  • Archer, South Park, Family Guy, Futurama, I like cartoons…
  • Jazz music, The Decemberists, Say Hi, Crazy girls like Nicki, Ke$ha, Britney (I know 🙁 ), Katy, etc.
  • Alan Rickman *Sidetrack – how did Neville Longbottom end up the hottest HP kid???*
  • Star Trek: TNG
  • Finding kick ass recipes
  • Tabatha’s Taking Over
  • Pizza
  • Potatoes – wedges, jojos, fries, crisps, deliciousness
  • The Rolling Stone
  • Working at the best place on earth (the other one!)
  • Decorating my apartment even if the BF thinks I’m silly sometimes with it
  • Yoga
  • Emailing awesome people LIKE YOU!
  • Zebra designs
  • OHMYGODYOUGUYSREDPANDAS
  • Zooborns
  • Reading
  • Snuggles!, This minus the baby
  • Movies, Netflix, on demand, recording shows
  • Reeses. Eggs are my favorite. Also, they give me heartburrrrrn :'(
  • Orange juice and maple donuts – best things ever invented.
  • Bison dogs
  • Maple cornmeal pancakes. Mmmmmmm.
  • I like food. That’s why I’m chubby. I gained four pounds AGAIN. This isn’t a list anymore is it? I should stop rambling… maybe?
Golly, that was a fun five minutes :-p
I’m tired, but not sleepy enough to be sleepy. DISASTER YOU GUYS.
Maybe I will turn off the computer and that will help! Maybeeeee!

The Medieval Pain Scales

Posted on by Grayson

The art of medicine has evolved immensely in the past few decades in general. We have new treatments that give people with a number of diseases, like cancer and HIV/AIDS a chance at a life longer than a few months.

And yet, there is so much still to be redone and changed for the better… like the pain scale. Or, more specifically, the pain scale for chronic pain patients.

You may be wondering to yourself why this even matters.

Because my pain doesn’t always fall into this damn scale. My ‘little bit’ is considerably different than that of a ‘normal’ person. And my no hurt has visited me a total of maybe 5 times in my life when not getting jiggy with it (yep, too much information, but I don’t care!).

Do you really know even know what the scale above means? I sure as hell don’t.

Do doctors really even pay attention to this scale? And to our answers to it? What if I’m perpetually at a 3-4?

In doing some research, I found that those of us talking about pain scales right now are not alone in wanting this to be revamped. Back in 2002, a guy named Jack Harich with the International Pudendal Neuropathy Association developed his own pain chart. And I kind of like it. It seems to be more in tune with how I see my pain than any other I’ve found so far.

First, you try to determine if your pain is mild, moderate, or ‘holy shit I am going to die’/severe. Thankfully, Jack included descriptions so you don’t have to guess! I don’t know that I exactly agree with all the descriptions. I think you can be ‘disabled’ at any range,  and I think you can live independently while being disabled. I’ve seen it in my family, and in my arthritis family.

He included descriptions of each pain level, which I agree with for the most part. I don’t know about the dental descriptions on some. But that’s because I had horrible wisdom teeth coming in and going back up for years.

I generally sit at a 5-7, jumping up to 8-9 probably a few times a week. Fun tidbit: today, I actually left work early because I was at an 8. I was 7-8 pretty much all day yesterday and ended up staying in bed most of the day.

To be honest, I don’t know that I’ve ever been at a 10. Maybe once or twice, but not that I can clearly remember.

Is this type of pain scale going to make it more difficult for patients to describe their pain with a number?

I don’t think so. I think that, along with the paperwork you’re sent for a first visit, you should be sent a copy of this pain chart. You should be keeping a general record of your pain for a month or longer before your appointment, according to the chart. Then, when you are asked what you current pain level is, you should be keeping this chart in mind.

Can you imagine how much easier it would be with a chart that is actually explained and uniform? And without those damn faces mocking your pain?

Even without this scale being implemented and explained to others, I’m going to use it to refer to in my own personal health. I may even print it out and bring it to my rheumatologist in order to better explain how I’m feeling. Because otherwise, you and I both know, those numbers don’t really mean a damn thing.

Chronic Pain and Your Friends

Posted on by Grayson

Okay, so we’ve all been there. Someone new comes into your life and you feel close enough to tell them about your RA. Or maybe, like some, you wear your RA on your sleeve and proudly (maybe the wrong word) let everyone know about Arthur and you.

It’s hard to explain what chronic pain feels like. Obviously, there’s the physical pain. A lot of people can’t really comprehend how badly that feels. But even more debilitating (in some cases) is the emotional and mental anguish caused by a chronic pain condition. It’s hard to explain what it’s like to feel left out because you can’t play on a jungle gym or participate in sports… or even go out sometimes. I came across this story, The Spoon Theory, from a Facebook page (I Love Someone With Rheumatoid Arthritis – you should join. I mean, clearly you’re here and you love me, so there. Okay, maybe not me.) It really does a good job of depicting the planning that has to go into certain days. I’m lucky enough (at least right now) that I have more than 12 spoons and I usually know which activities suck up more spoons, avoiding them whenever possible. But there are definitely days when I don’t know how I got from sunrise to sunset without an IV of coffee.

Letter to People Without Chronic Pain

Posted on by Grayson

So I was perusing my RA-related Facebook pages today and found this post in one of the discussion boards. I think that it’s a pretty accurate description of how it is to try and explain RA to a ‘normal’ person.

Having chronic pain means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about chronic pain and its effects, and of those who think they know, many are actually misinformed.

In the spirit of informing those who wish to understand, these are the things that I would like you to understand about me before you judge me….

Please understand that being sick doesn’t mean I’m not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I probably don’t seem like much fun to be with, but I’m still me–stuck inside this body. I still worry about school, family, my friends, and most of the time, I’d still like to hear you talk about yours too.

Please understand the difference between “happy” and “healthy”. When you’ve got the flu, you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time. In fact, I work hard at not being miserable. So, if you’re talking to me and I sound happy, it means I’m happy. That’s all. It doesn’t mean that I’m not in a lot of pain, or extremely tired, or that I’m getting better, or any of those things. Please don’t say, “Oh, you’re sounding better!” or “but you look so healthy!” I am merely coping. I am sounding happy and trying to look normal. If you want to comment on that, you’re welcome.

Please understand that being able to stand up for ten minutes doesn’t necessarily mean that I can stand up for twenty minutes, or an hour. Just because I managed to stand up for thirty minutes yesterday doesn’t mean that I can do the same today. With a lot of diseases you’re either paralyzed, or you can move. With this one, it gets more confusing every day. It can be like a yo-yo. I never know from day to day, how I am going to feel when I wake up. In most cases, I never know from minute to minute. That is one of the hardest and most frustrating components of chronic pain.

Please repeat the above paragraph substituting, “sitting”, “walking”, “thinking”, “concentrating”, “being social” and so on….it applies to everything. That’s what chronic pain does to you.

Please understand that chronic pain is variable. It’s quite possible (for many, it’s common) that one day I am able to walk to the park and back, while the next day I’ll have trouble getting to the next room. Please don’t attack me when I’m ill by saying “But you did it before!” or “Oh, come on, I know you can do this!” If you want me to do something, then ask if I can.

In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are–to be physically able to do all of the things that you can do.

Please understand that “getting out and doing things” does not make me feel better and can often make me seriously worse. You don’t know what I go through or how I suffer in my own private time. Telling me that I need to exercise or “do something to get my mind off of it” may frustrate me to tears and is not correct. If I was capable of doing some things any or all of the time, don’t you know that I would? I am working with my doctor and I am doing what I am supposed to do.

Another statement that hurts is, “You just need to push yourself more, try harder…” Obviously, chronic pain can deal with the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain that you could ever imagine.

Not to mention the recovery time, which can be intense. You can’t always read it on my face or in my body language. Also, chronic pain may cause secondary depression (wouldn’t you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.

Please understand that if I say I have to sit down/lie down/stay in bed/or take these pills now, that probably means I have to do it right now – it can’t be put off or forgotten just because I’m somewhere, or am right in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.

If you want to suggest a cure to me, please don’t. It’s not because I don’t appreciate the thought and it’s not because I don’t want to get well. Lord knows that isn’t true. In all likelihood, if you’ve heard of it or tried it, so have I. In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions. It also includes failure, which in and of itself can make me feel even lower.

If there were something that cured, or even helped people with my form of chronic pain, then we’d know about it. There is a worldwide network (both on and off the internet) between people with chronic pain. If something worked, we would know. It’s definitely not for lack of trying. If, after reading this, you still feel the need to suggest a cure, then so be it. I may take what you said and discuss it with my doctor.

If I seem touchy, it’s probably because I am. It’s not how I try to be. As a matter of fact, I try very hard to be normal. I hope you will try to understand. I have been, and am still, going through a lot. Chronic pain is hard for you to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating.

Almost all of the time, I know that I am doing my best to cope with this and live my life to the best of my ability. I ask you to bear with me, and accept me as I am. I know that you cannot literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try to understand in general.

In many ways, I depend on you – people who are not sick. I need you to visit me when I am too sick to go out…Sometimes I need your help with the shopping, cooking or cleaning. I may need you to take me to the doctor or to the store. You are my link to the normalcy of life. You can help me to keep in touch with the parts of life that I miss and fully intend to undertake again, just as soon as I am able.
I know that I asked a lot from you and I do thank you for listening, it really does mean a lot.

 

Reliance on Pain Meds

Posted on by Grayson

So in my last post I talked about how nice it was that my new job was so much better on my joints. I didn’t take any medicine before working last night and won’t be making that mistake again anytime soon. When I got home, not only did my knees and ankles ache, but my shins did too. It got to the point where I was trying to get comfortable in my dad’s recliner and crying alone in the family room. I did go ahead and take medicine but had to bombard my legs with pillows I stole from the family room just to get to sleep.

Could someone please tell my body to calm down?
I think the most frustrating thing about the pain is I wasn’t standing a lot. I wasn’t doing very much more than any other normal person does every day. And yet, last night, I wanted to take a chainsaw to my legs because I was already in that amount of pain. Stupid arthritis.