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unexpectedadvocateblog

My journey – a Phoenix rising from the ashes of disease in splendor

Being Disabled Is a Job

“We all have limitations, we just need to stop defining those limitations based solely on the experience of able-bodied people.”

An absolutely brilliant piece of work that is thoughtful, insightful, and a needed challenge to society’s understanding of the value of a disabled person and what constitutes work. I really love Charis’ work. She is definitely worth a follow!

BeingCharis

I’ve heard some say disability benefits are unnecessary hand-outs for people who should just die off, and why should hard-working people foot the bill for people who are lazy, whose lives mean nothing?

The disability process itself mirrors these same sentiments – the 3-5 years (average) process for applying, fighting for, and receiving disability (SSI or SSDI) in the USA is by its nature a grueling process, with analysts hired to deny applicants not once, but twice (standard procedure), forcing the applicant to appeal their case twice over several months before a hearing is granted, which then takes years to schedule due to a shortage of judges. It is a process intended to force people to give up.

You usually have to be literally dying to be automatically granted disability in the USA.

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A Sad Dad’s Day

So, here I am in 2017 and I feel sad and depressed on Father’s Day.

Perhaps I am too old for this. Perhaps I should be smarter or stronger about this day or perhaps I should just be able to simply walk away and be okay – reminding myself that this is just another day. But, I can’t do that.

For the past six years, I have worked hard to make Father’s Day amazing for my husband and show him that despite his lack of a father or mine that this day can still be wonderful, full of lovely memories with our kids. The kids only realized yesterday what today was because I’ve been too stressed (insert – in too much pain) to plan this ahead of time. But, after years of working with them to make holidays special, learning to show love and appreciation for those we care about – they jumped into action on their own to celebrate him. My daughter painted for him and my son made a homemade card. Then, when we were at the store yesterday my son and I made my husband and my daughter go somewhere else so we could pick out a cheap movie from the discount bin just for him. We don’t have a lot of money right now but they always know that homemade cards, special drawings, and simple presents from the heart have more value than anything store bought.

Today, my husband is happy. Our home life is laid back, easy-going, and simple. We spend lots of time together – with pleasure. We cultivate an atmosphere of honesty and

Statue of a Chinese man in robes with long hair and hands clasped together. The robes go down to the ground and cover his feet so we don't see them. He has a long beard and mustache.
Old Man – Statue from unknown artist at the Kansas City Arboretum Sculpture Garden

trust. Things are peaceful and loving in a way that neither of us experienced growing up. Today, that doesn’t detract from my sadness.

I had given up long ago on having a father that was interested, or even wanted me. My brothers were always argued over by my parents. I can remember my mother screaming at my dad over the phone telling him he had to take me and my sister too for visitation rights. But, all that accomplished was my dad picking us up then dropping us off with my aunt while he had my brothers. For my mom’s part, she spent my whole childhood making people feel sorry for her and trying to pawn us off on others so she could be alone – sometimes for weeks at a time. She made it very clear that she didn’t want us and we kept her from fulfilling her dreams. She actually said those words on multiple occasions. My dad, on the other hand, was too deep in the throes of addiction to care for anyone or anything outside of himself. The four of us were just incidental, accidental pawns in either of their lives.

I accepted the state of my relationship with dad a long time ago. I had grieved what I wasn’t getting and I moved on with the very real knowledge that he wasn’t a part of my daily life and had no real interest in doing so if it didn’t do something for him. I was only important if or when he needed something from me, which was almost never. So, what now?

Now, he showed up about a year ago via social media saying he wanted something between us. I was cautious and distant. I talked to him and told him about my health issues up front. I didn’t mince words. As someone with several chronic health issues and who is in constant pain, I just don’t have time for that anymore. With anyone. I felt…..numb. Unsure and numb without a clue how to navigate the situation or if it was going to last.

It didn’t last. He unfriended me months later after I wasn’t pandering after him and praising him and falling all over him for suddenly showing up and showing partial interest. I tried sending him a few messages but wasn’t interested in chasing him. It was clear from our relationship that he wanted just that – I was supposed to fall all over him like a little girl who missed her daddy and didn’t question anything. I was supposed to hum sweetly to the tune that this pied piper was making, never noticing that I was heading out of town to be drowned and disposed of.

Those who know me understand something about me – I don’t whistle and sing while blindly following someone. I am inquisitive, questioning, and highly analytical. I notice emotions and shifts in conversation that are so subtle they aren’t usually recognized. I pick up on insinuations, underhanded digs that are hard to trace, and connections between the people with whom I am speaking that surprise folks later on down the road. Suffice it to say, I wasn’t dancing to his tune. And, it’s been months since I had heard from him.

Then, suddenly I saw that he had a new Facebook account. My sister told me he does that regularly but I knew he had that same account he originally contacted me from for several years. He didn’t always post and isn’t much into social media but does use it to keep track of family now and then. After that, he friend requested me again – a few days before Father’s Day.

I believe that people can change. I believe in the power of redemption, the power of love, and the power of kindness and compassion. I think that if anyone wants to fulfill the goodness and love that resides in him or her, it may take work but it can be done. I believe each of us has power and goodness that just needs to be cultivated with the right choices and the right amount of work. But I also believe in being honest so that you can deal with life as it is and not waste time chasing a scenario that may never happen.

Being contacted a few days before Father’s Day proved to be just another attempt to get praise and admiration from a relationship that he never worked for or cultivated. I ignored that request and have no desire at this point to change my decision. I think I will always carry a measure of sadness with me at the loss of what I didn’t have. Now, I will carry with me the loss of what will never be. I had that deep down secret hope that as adults it might be different. But, if a person is unwilling to change then I cannot force a path that shouldn’t be trod upon.

Winding pathway that curves right then straightens out, with on either side that are stretched to the sky and arch over the pathway. The trees are green with speckled light from the sun shining through onto the cement pathway.
Path at the Kansas City Arboretum Sculpture Garden

At the end of all this, I will get up and go spend time with my family. I will make more good memories on this day, but I won’t ignore the sadness that I carry. It prods me to be a better wife, mother, friend, and even stranger on a regular basis. The loss and pain in my life have made me a better person. That is all I can hope for.

 

Dream a Little Different: Part One

A really great blog about how we have choices to make that really aren’t choices when we live with a chronic illness. Very well written, solid voice and so relateable. I hope you enjoy it as much ad I have!

A Calculated Risk

***This post was written on May 13, 2017. The prospective surgery and its aftermath are now a moot point. Nevertheless, this piece was written within the context of its time and bears posting because it also happened, too.***

Alternatively Titled: There.

This is what they want.

Logically, I get it. I’m there. It makes enough sense.

Psychologically, it is 4:45pm, February 2nd, 2016 and I’m desperately trying to get anyone to say no, we’re not going forward with this heart, so that I don’t have to.

Psychologically, it is being strapped to the bed with 1 inch diameter pipes coming out of my chest, pumps stemming from my pelvis, tubes flopping inconsiderately out of holes above my belly button.

Psychologically, it is a choice, to say no to a scalpel, that I have never, ever been given in my life.

Putting in a defibrillator was never my decision. I had…

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Working with Chronic Pain

I recently read an article in Forbes magazine that was being circulated around the chronic patient community on Twitter about pain and productivity in the workplace.

I am not impressed, I have to say. The article was just another article written by someone who doesn’t deal with pain telling folks who actually live with pain what to do. We need more patient voices on topics that make a difference in our lives. So, here are my suggestions for dealing with chronic pain in the workplace.

1. Carry some sort of topical analgesic that helps with pain. I’m a huge fan of Biofreeze and carry it with me every day.

2. Don’t be afraid to bring a heating pad to work. I have done so on multiple occasions to help with my back pain.

3. Bring a pillow to sit on. Even the cushion in my ergonomic chair ends up hard after a while. A little thing like that really helps my comfort levels.

4. Don’t be afraid to ask for things like an ergonomic chair or a standing desk. I have both. I alternately sit and stand throughout the day and that helps. Very often you can get a doctor’s note for these things if you’re afraid to just ask for them.

5. Talk to your boss, if you feel comfortable, and discuss the challenges you have at work and the little things that help you get by. I always allow my bosses to ask questions about my health and offer that to help create awareness and to create open lines of communication.

6. Take stock of your job and don’t let fear keep you from making changes and working for a different company if it’s what you need. I have allowed fear of the unknown to keep me from moving in the direction I need to move in. It kept me overstressed and bogged down.

7. Practice good sleep hygiene. Try to go to bed at the same time every night. Make sure you turn off all electronics about two hours before bed and keep your bedroom dark. It needs to be as cozy and womb-like as possible.

8. Keep easy, healthy snacks close at hand when you lag in energy. Healthy snacks will help keep you afloat. This is uber important for me as I’m hypoglycemic. Allowing my blood sugar to drop will spur high pain levels and terrible brain-fog, along with being hangry. No one can work with me like that.

9. Get up and move at regular intervals if you sit for your job. I take that time to atretch also. If I need to I’ll take a short walk, go outside, and get away from my desk.

10. Breathe control is a huge help for me with pain. Sometimes pain causes me to panic and feel claustrophobic. I’ve meditated for years and I found several techniques to help calm me. I love math so I’ll count rhythmically by two’s or if I really need to concentrate I’ll count by seven or eight up to a certain number then backwards. I also use a visualization technique where I see golden liquid flowing over my muscles a section at a time. As I imagine this I breathe in and out evenly, while paying attention to the muscles where I see the liquid. If anything seems tight I make an effort to loosen it up. I start at my head and go down my back then it comes back up the front of my body.

11. I take my meds on time and in the dosage I am supposed to. This may seem crazy, but missing or being late on just one dose of my savella or Gabapentin in the afternoon increases my tension and pain levels.

12. Finally, I can’t finish my list without talking about stressors. With chronic pain I only have so much thinking ability or energy in a day. So, I don’t get mixed up with people who gossip, put me down, lie about me or make me feel bad about myself. You have to earn the right to be my friend over time with your character choices. Keeping stressful people at arms length really lowers my stress levels and my pain levels. I have to take care of me and my heart or I won’t be any good for those that I love.

I hope this is helpful, whether you work or not. I’d love to have feedback, your tips and trick, or ideas you may have about this. Living a life of chronic pain is a delicate balance that requires effort and planning. Nothing is perfect, but if you assess your environment and analyze your options you may be surprised at what you come up with that helps you on a daily basis.

On The Intersection Of Pain And Beauty: One Patient’s Journey | Scope Blog

I just had the privilege of speaking at Stanford University for the Medicine X conference on April 23rd. It was truly a life changing experience for me. This isn’t my whole speech, but it is a synopsis of my presentation and includes the documentary they did about me and my art.

I feel so humbled and so excited. I will write more soon but wanted to post this so everyone can see the documentary they made. More to come about pain, about art, and about presenting.

http://scopeblog.stanford.edu/2017/04/23/on-the-intersection-of-pain-and-beauty-one-patients-journey/

What to do?

Choices have me snagged at the bottom of the river, where I’m flogged by the rushing water that pulls me beyond what I can handle. My grip is weakening and my sanity is floating nebulously above me – barely within reach.

I have new symptoms and new issues. I’m trying to juggle big choices regarding my health and am about to go through some serious testing to see what my problem is. The stats are clear that the longer those of us who have autoimmune issues live, the more likely we are to pick up stray diseases. 

The challenge is real. The pain is real. The stress can be unbelievable.

I have choices about jobs to make, choices about where to live. There are relationship choices and choices about love. I have family choices and connections to handle, along with physical pain that daily grinds my bones and muscles into powder.

There are only two ways that I know of to handle the stress.

1. Accept the flow. 

I try to face the truth about the course of my disease. I’m realistic about what I can and can’t do. I also try to reach out for help if I need it. Being flexible in this way removes the possibility of greater pain and resistance, by not fighting what is happening to my body. It allows me to accept myself regardless of ability. It also makes me able to be grateful for the help I do receive.

2. Self-care. 

This one is huge for me. I have to learn to stop sacrificing what I am and need for those around me. I’m learning that I need to listen to my body’s craving space and distance. My mind craves art and classical music. My ears crave quiet. I need the things that calm me and help me to be the best version of myself. If I don’t love and care for myself, I can’t love and care for others. There will be no reciprocity in this life without this aspect. 

And, I need therapy. Someone bouncing my thoughts back to me, illuminating alternative perspectives and cultivating thoughtful responses. I need solid methods and possibilities to do what needs to be done. 

Ahead of me are the hard, hard choices with very divergent paths showcasing alternate realities. What to choose? How to choose? What to do?

I don’t know, but I do know that I need help.

Pain runs down my face

‘Pain runs down my face’ – pencil

So, I am now on a completely divergent path. Since I fell, my RA and my fibro have ratcheted up to a level I didn’t think was possible. I had so much inflammation I had to get a steroid shot to calm my body down. Although that shot helped, it didn’t cure me and didn’t last long term. It has been two weeks and I feel the fluid creeping back into my joints like a sponge soaking up the water from a covered crack in the wall. I was walking non-stop with a cane before and I am down to 80%, so that is an improvement. 

Nowadays, I am shoving myself through what feels like sludge – like a dirt field that was sprayed with a firehose on a humid day with a thunderstorm in the forecast. “Hobbling” is the word that repeats like a scratched record, echoing through my brain and reverberating back like sound waves in a canyon. It takes a great deal of effort to get up and walk a short distance to the bathroom at work. Once I get there I have to plant myself for a while and play with my phone to distract me from the fatigue and exhaustion tugging at my muscles and weighing me down into the floor like lead weights. I breathe heavier, more shallow by the time I sit on the toilet and hope that if anyone is in there they don’t hear my strained breathing. Everyone knows I walk with a cane and I have told some people who have asked. My health is no secret. I just don’t want it to be an excuse to be dismissed.

On this day of days, I had to go to another location and stand on my feet for work for long hours. I brought my cane and used other things to help me cope and take the pressure off my feet so they didn’t reach the boiling point too soon. I rested as much as I could but my body did not see fit to acknowledge my efforts or grant me any kind of mercy. I had pushed and struggled and worn myself out in a way I didn’t even realize until I was driving and almost made it home.

I live pain. I breathe pain. Pain is a tornado whipping around my body tossing me in different directions like Dorothy holed up in her house in ‘The Wizard of Oz’. Fatigue is constant and on me like a new layer of skin. 

What can I do but keep moving and keep surviving? There is nothing more for me to do but drag these balls of pain, fatigue, and exhaustion behind me leaving a trail in the sand as I force myself to move forward against the power of this uneven ground that cannot be counted upon. 

I don’t know the future. I have no idea if this pain will ease or get worse. I don’t have a crystal ball to tell me that my disease will finally come under control by the beast of medicine. 

All I do know is that I crack when I get home. I lurch to the couch and almost fall before I get there. I need help getting undressed and the whole time the pain is loud, banging against my body like a drum. Throbbing and yet sharp, my skin is untouchable and I can’t focus on anything. I try not to cry in front of my kids or my husband. But I just can’t help it.

The pain runs down my face anyways.

And then I fell apart….Part 2

So, let’s fast forward a month and a half. What a journey this has been since I fell!

I spent about four days in a splint – the most I could tolerate because of my claustrophobia and the exhaustion it caused me to walk with crutches. I am sure I started walking before I should have but I was scared. With my RA the loss of functionality is a very real one. I started stepping easily on my foot and then went to just one crutch. After that I eased into my cane and was able to walk “normally” again. But, I have encountered a real problem since then. I can hardly walk on my right foot anymore. Both of my feet are in intense pain on a regular basis and the amount of swelling in my feet has tripled. Yes, it has tripled.

I am slowly getting better, but I don’t think I will now be without a much higher level of pain in my foot than before. It hurts unbelievably every day at some point and it has set my fibro pain off in a way I never knew was imaginable. My fibromyalgia pain is the reason that I got out of the splint so early. Because my foot hurt, it would spread the pain throughout my body like a blanket. Nothing touched that pain – and I take some pretty hard core meds. It felt like I was being shrouded in electric shocks, coupled with burning and tingling pain that would turn into sharp shooting pain in different areas around my foot and ankle and then just explode into all over pain that included not only my skin but it felt like it went down into the roots of my bone and saturated every cell in my foot and leg.

For weeks after the fall, my pain levels went from about a 4-5 on a regular basis to about an 8-9 on a daily basis. On the day of my fall, the hospital had to give me my first ever shot of morphine to calm my body down. I was terribly frightened because I have never taken anything that strong. I didn’t want to but my husband pushed and urged me to because he could see the intensity growing and getting worse. I couldn’t stand to be touched on my foot, and then it grew to my ankle and then my leg and my knee by the time I got that shot. It felt like the room was charged with pain that was electrically being transferred into me via a lightning bolt. It was almost like just being close to my skin hurt me. When the doctor gave me that shot it took about 15 minutes to calm me down. I wasn’t without pain but it calmed down to a tolerable level so I could go home and manage.

So, the final diagnosis? I hadn’t broken anything but I tore ligaments and had bruises all over my feet – from the spot where my toes connected to my foot to the sides of my ankle to the bottom of my foot. Yes, I just said I bruised the bottom of my foot. It was pretty unbelievable the way that I was damaged and then bruised from a simple fall down two steps. I am just thankful that it wasn’t worse and I didn’t break anything. As crazy as that sounds, I really have been grateful the whole time.

Why am I grateful? I am not sadistic and I am not crazy about what I went through. I am just thankful and feel like I dodged a bullet because if I had broken anything I would have to go off my meds. If I miss a dose of my meds just once I feel it and by the time I miss two doses (like when I have a migraine) then I am so sore and so stiff that it takes me three days to recover. I feel like I totter on the precipice of being able to function and tipping just slightly in either direction will and has made me fall.

So, I am grateful it was not worse than it is.

Drawing in colored pencil of a foot with blue, green, purple and lightning bolts on the skin
Electric pain – my foot on fire!

And then I fell..Part 1

So, about a week and a half ago I was exiting a building after a job interview and fell down two stairs. They weren’t particularly steep or treacherous in any kind of way. I was talking to someone and looked off to the left. I thought I had one more step before I had to go down.
And then I went down.
It really was not my most graceful moment. I ended up splayed out on the asphalt after twisting my ankle under me and then landing on it. The pain was so bad that everything went white and it had nothing to do with the sun. The guy with me was very kind and thoughtful. He tried not to make me feel embarrassed and was very gentle in how he spoke to me. The truth is that I couldn’t get up. I have twisted my ankle before and it would hurt like hell but the pain would recede. The pain in my foot didn’t go away this time but instead it got louder, screaming at me in utter protest. For a few minutes I didn’t think I could even get up. The guy with me asked how he could help me and I handed him my bag, turning over on my knees and pushing off the demon step to stand upright. I limped and winced and tried not to let him know how scared or worried I was. I laughed and made jokes and hobbled to the gate to exit.
Apparently my fall was even less graceful than I expected because I crossed the street to go back to work and the security guard at the entrance came running over to check on me. I answered his questions and kept reassuring him that I was alright and didn’t need help. He wasn’t just doing his job – he was genuinely concerned. I then hobbled back to my building, and back to my desk. I truly, and rather naively, thought the pain would settle down and go away like all the other times I had twisted my ankle. It just kept getting worse.
By the time I left a few hours later when I could stand it no longer, I could barely walk on it and my foot looked like a fat puffer fish all bloated in self-protection mode. When I got down to the guard at the exit doors of my building he was really worried. He has always looked out for me before and just wouldn’t take no for an answer. He wanted me to wait there and have my husband come get me. He also offered to have one of the guards drive me home if I didn’t feel I could.
Well…so I didn’t listen when he said I shouldn’t drive. I was stubborn but polite and managed to get away. I told him I wasn’t going to drive. But all I wanted was to get home. I knew I needed x-rays and that I shouldn’t push my luck. But I did push my luck and drove myself home.
I am sure if you were a passenger in another car you would have thought I was either in lots of pain or having strange spasms because I couldn’t sit still and I couldn’t keep my face still. I managed to get home and looking back I am thankful I didn’t get into an accident. It just wasn’t safe driving like that. But, I got home and got partially changed since that was the most I could do and threw myself down onto the bed. I managed to drag myself into a sitting position and pulled out my laptop to do some work.
That was pretty futile but I tried.
In the last five years I have experienced an unbelievable amount of pain. The kind of pain I face and deal with daily would make a person without pain just buckle and cry. My tolerance is very very high. But this pain…..it was just unbelievable.

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