Why It Is So Hard To Be A Chronic Pain Patient: The Loss of Your Previous And Future Self

 

Unforgiven tree“It’s a hell of a thing, killin’ a man. You take away all he’s got and all he’s ever gonna have”

-Unforgiven

 

This quote from the wonderful movie Unforgiven completely sums up why chronic pain is so debilitating and heart-wrenching. It doesn’t take just one part of your life — it takes everything. You grieve for the life you once had, and you grieve for the life you could have had. Chronic pain has a compounding effect.

You grieve for your past self. The one who played sports. The one who would go to the gym. The one who went to work. The one who could walk out of the house, carefree, grab a coffee and go on walk or hike. The one who would take their dog for a walk. The one who could go on vacation. The one who could travel on an airplane to see family. The one who would meet up with friends for brunch, for dinner, for drinks — maybe even all three in a day … who knew? The world was your oyster.

All that … gone.

So you think to yourself, due to my current restrictions, what can my present/future self do?

The answers can be excruciating.

You’ll never have kids — you’re physically incapable of birth or raising them. You’re never going to have a dog — you can’t physically take care of one. You’ll never travel again — you physically can’t sit in the airplane seat or get to the airport (no Neuschwantstein Castle or Bavaria). You’ll never be physical with someone again — your body can’t tolerate it (that probably prevents you from ever having a relationship again).  You’ll never be able to go to Lambeau Field (insert your team stadium here) and watch your team play in one of the best football venues in the world.

You’ll never wake up a day without debilitating pain.

Also in terms of the future, chronic pain takes away your ability to overcome. The concept that if  you work hard enough, find the right doctor, in the future, you will be cured. There is no overcoming a different way of life. No losing a leg to be fit with a prosthetic. No wheelchair bound life. No change in diet that you have to get used to. There is just unrelenting pain that takes away your ability to engage, to leave your house, and to participate in your own life.

The harsh reality is that even if you can wrap your brain around all that you have lost and all that you will never have, you are still left with the pain. The pain is always there.

This is why it is so hard to be a chronic pain patient.

— Blogs, stories and articles like this need to get the word out about what the chronic pain patient really has to endure. We are reduced to whiners, apathetic people who just don’t try hard enough. We are told to buck up. We are told that we are drug addicts. We are told we need to get over ourselves. Unfortunately, due to the nature of our chronic pain, we are hidden from society — there isn’t a face to the disease out and about in the world because we are in beds or on the couch.

*Let’s change that. Let’s be heard. Only then will the medical community and society make our cause their cause.

Until next time.

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Madeline Fresco is a novelist who lives in San Diego. She is the author of CROSSED THE LINE, available for Kindle at Amazon.com, for Nook at Barnes & Noble, and as an ePub at other eBook retailers. You can also listen to her novel as a free, serialized audiobook at madelinefresco.com. Her second book THE CHOICE, is available on Kindle at Amazon. Her third book ANGUISH, is available for Kindle at Amazon.com

Chronic Pain Feelings

Do not mock pain

 

I found this image on the Chronic Pain Support group website. I found it very helpful to verbalize what I’m sometimes thinking when people are shitty to me.

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This blog is made possible thanks to this GoDaddy coupon CJSIGLERC. If you want to blog yourself, I highly recommend it, check it out.

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Madeline Fresco is a novelist who lives in San Diego. She is the author of CROSSED THE LINE, available for Kindle at Amazon.com, for Nook at Barnes & Noble, and as an ePub at other eBook retailers. You can also listen to her novel as a free, serialized audiobook atmadelinefresco.com. Her second book THE CHOICE, is available on Kindle at Amazon. Her third book ANGUISH, is available for Kindle at Amazon.com

Updates for the week – massage therapist, psychologist, and social security

HeadmassageSo far, it’s been a fairly productive week.

One of the very nice ladies from my support group mentioned she had a friend that was a massage therapist. We will call the massage therapist LR.

I called LR yesterday and left a message. She was very prompt in her reply to me via text, which I actually like better than phone conversations.

She was very professional and very sweet. It is, as you all must know, very hard to describe our life circumstances to those around us. It’s embarrassing for me to have to explain to people that I can’t really leave my house. Do you know how hard that is for someone who used to work as a nurse, take call, play in 3 separate soccer leagues, walk her dogs, go to the gym, and have a pool membership? Sometimes, despite all that I did, I still liked to simply walk downtown for fun. So to tell someone I can’t even leave my house to get a massage, it breaks my heart just to have the words come out of my mouth.

Yet, she didn’t make me feel stupid. She was like, whatever! I was so appreciative of that. We worked out a price, which she had great ones, and scheduled a massage for next week. I’m excited. I hope it helps ease my stress level a bit. It will be my first massage in about a year.

As for the psychologist, that is proving difficult. The irony of the situation is I could see a massage therapist not wanting to come to my house and massage a client in her bed. If I was going to say no to that or a psychologist over the phone, I’m fairly certain the in-bed massage would win the declination category.

Yet, it’s the psychologist that I can’t seem to pin down. I could sign up for one of those monthly subscriptions to an online psychologist, but that’s not for me. To have to reexplain my situation over and over and over again? Please see above …

I’m gonna keep working at finding one though. There has to be someone out there willing to do it.

footmassage1As for Allsup, they finally received my paperwork stating I will pay them, even though I have signed that document about 2k times. Now, they can move forward with my appeal. I am fairly surprised that the customer service representative I talked to over the phone still didn’t understand that the only thing that has been filed for the appeal is a request for more time. We had two months, and the hold up, apparently, was my payment paperwork. I have not been with MetLife since November. They had 5-6 months to get me that paperwork before it became an issue. That is what held up my appeal. They have seriously dropped the ball on so many occasions I can’t believe it. I will not care if I win though. I’m pretty scared. As I’ve stated in previous posts, my finding a job, even if I can do it, will be next to impossible. I know, I know – they say I can work at a fast-food restaurant. Mmm-hmm. It’s like they did not read my medical records.

That’s about it. Oh, I did sign up for PT again. It’s on Monday. I’m terrified. I got pressured into it though, even though I see why this person wants me to try it again. It’s just, I would never be in the situation I currently am if it wasn’t for two physical therapists.

Next week, I’ll let you know how the PT goes.

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This blog is made possible thanks to this GoDaddy coupon. If you want to blog yourself, I highly recommend it, check it out.

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Madeline Fresco is a novelist who lives in San Diego. She is the author of CROSSED THE LINE, available for Kindle at Amazon.com, for Nook at Barnes & Noble, and as an ePub at other eBook retailers. You can also listen to her novel as a free, serialized audiobook atmadelinefresco.com. Her second book THE CHOICE, is available on Kindle at Amazon. Her third book ANGUISH, is available for Kindle at Amazon.com

Support group – success

I had a support group meeting on Sunday that was finally a success!

I have been working on Meetup for awhile trying to get a group together. It’s been really hit or miss.

Not this time. This time, I sent an invite out to the people who have been emailing back and forth. That seemed to be the most successful. One of the ladies wanted to do a game night and so that was the activity.

I was able to get 4 people to show up.

It was really fun! I’m super glad that I stayed with it.

Everyone was really nice and I actually like each and every one of them.

I’m not sure when I should do the next event, but I feel like I should invite people soon, to keep the momentum up.

This blog is made possible thanks to this GoDaddy coupon. If you want to blog yourself, I highly recommend it, check it out.

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Madeline Fresco is a novelist who lives in San Diego. She is the author of CROSSED THE LINE, available for Kindle at Amazon.com, for Nook at Barnes & Noble, and as an ePub at other eBook retailers. You can also listen to her novel as a free, serialized audiobook atmadelinefresco.com. Her second book THE CHOICE, is ava

3 year mark this weekend

IMG_1042So, I hit the 3-year mark this weekend. May 28th. Ugh.

I don’t know what to say to all of this. I remember how I felt right when this all happened. I remember pacing in my apartment in San Francisco, talking to my friend on the phone. We were discussing the fact that I was supposed to go fly to see my brother’s baby being born in 2 weeks and I had no idea how I was going to do it. I know I could make the flight, but watching his daughter who was one at the time? I had no idea. She would want to run, and jump … and have me pick her up.

The worst part??  I wasn’t at my worst yet. This time 3 years ago, it was just the upper back ligament tear. No lower back involvement yet. I could still drive. I could still sit. With as bad as the pain was, I had no idea how much worse (much, much worse) it was going to get.

I can not wrap my brain around how much pain I have been in and for how long. Day in and day out. Constant. No relief.

What I wouldn’t give for one day off. One day where I could manage my life. Get on a plane, move someplace that was cheaper. Everything just involves so much work because there is so little that I can actually do.

I think I want to give myself a little credit though. It’s been so long, I really don’t know how I have coped as well as I have. I know I don’t always cope as well as I would like to, but overall, with the shit that has been thrown my way? Seriously, not as bad as I could be handling it. I have lost my marriage, my house, my friends, my dog, my job, my city … and on top of that, I’m in constant pain.

IMG_0497I feel like I could be angrier. I’m pretty angry, but I know I could be raging mad right now. I could see how I could let the bitterness overwhelm me. Bitter for all the things I lost and all the things I will not have. I’m mad at my family for being so unavailable to me. They are so selfish and so uncaring. The irony is, if you asked them, they would say they care a lot — just as long as they don’t have to do anything about it. I’m pretty sure I will have to be absolutely homeless for them to take me in. Forget the loneliness and the pain and just wanting family around when you need them most. That just simply doesn’t compute to them. I will need to be penniless for them to help me. Then, I’m fairly certain it will crush me to have to take their help. Does that make sense? If I took their help a few months back, I would not have felt so demeaned. The thing is, if it’s when I have no money, it’s because they will have to. That’s what will be crushing. They certainly will not help me out with emotional support.

I only have my brother. Both my parents are dead.

As for friends, I’m not super angry about that. I get that people have their own lives. I’m fairly comfortable with that.

IMG_0355I’m sad I will never have a dog of my own again. Maybe, if I got married again someday, they could manage the dog. Even if I had my own house, how would I pick up the inevitable messes dogs make? I wouldn’t. So I’d have to wait for a husband. Considering I’m home bound, I really don’t see that happening.

These are the things that make me shrug after 3 years. It was fine to be somewhat delusional the first year — even the second. I kept having so many setbacks I kinda left a flicker of hope that my eventual return to health was simply delayed by all the setbacks. But, it’s been 3 years now. Now, this is just the reality.

I think it’s hard on my few remaining friends to fathom that I’m not getting better. It’s just a back injury — lots of people have back injuries. Why am I not getting better?

I don’t know.

I’m just not.

Mostly, I’m sad. I often think of my death bed and looking back at the life I could have led. I’m sad for my niece. I wish I could be the aunt I was before I hurt myself. I’m sad I’ll never be able to adopt. I’m sad that I won’t be able to watch my career grow. I’m sad for all the places I won’t see. I’m sad to realize my brother and his family are assholes. I’m sad because I actually liked my life before this happened. I’m just sad it all had to stop. All of it. No adjustments … just everything. Everything stopped.

This blog is made possible thanks to this GoDaddy coupon. If you want to blog yourself, I highly recommend it, check it out.

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Madeline Fresco is a novelist who lives in San Diego. She is the author of CROSSED THE LINE, available for Kindle at Amazon.com, for Nook at Barnes & Noble, and as an ePub at other eBook retailers. You can also listen to her novel as a free, serialized audiobook atmadelinefresco.com. Her second book THE CHOICE, is available on Kindle at Amazon. Her third book ANGUISH, is available for Kindle at Amazon.com

Social Security Hearing Denial – The Reasons I Was Denied

I feel alone

As promised, here are the reasons listed that I was denied.

First off, it seems that I did not have a social security approved diagnosis. Here is what they have listed for spine (copied and pasted directly from the social security website):

1.04 Disorders of the spine (e.g., herniated nucleus pulposus, spinal arachnoiditis, spinal stenosis, osteoarthritis, degenerative disc disease, facet arthritis, vertebral fracture), resulting in compromise of a nerve root (including the cauda equina) or the spinal cord. With:

A. Evidence of nerve root compression characterized by neuro-anatomic distribution of pain, limitation of motion of the spine, motor loss (atrophy with associated muscle weakness or muscle weakness) accompanied by sensory or reflex loss and, if there is involvement of the lower back, positive straight-leg raising test (sitting and supine);

OR

B. Spinal arachnoiditis, confirmed by an operative note or pathology report of tissue biopsy, or by appropriate medically acceptable imaging, manifested by severe burning or painful dysesthesia, resulting in the need for changes in position or posture more than once every 2 hours;

or

C. Lumbar spinal stenosis resulting in pseudoclaudication, established by findings on appropriate medically acceptable imaging, manifested by chronic nonradicular pain and weakness, and resulting in inability to ambulate effectively, as defined in 1.00B2b.

I do not have any of these. This does not mean that I am not suffering (for those of you who don’t have a spine issue, but who want to know what the social security administration views as a basis for diagnostic approval click the link). I can not believe that they disregarded all of the 900 pages of medical records that I submitted just because I did not have one of these three spinal issues.

Also, as of note, the first diagnosis, if you have that severe of entrapment of the spinal cord or the nerve root to cause cauda equina that is emergency surgery. That is the loss of bowel and bladder function. Also, for the record … YOU CAN HAVE SURGERY AND YOU WILL BE BETTER! Therefore, you wouldn’t need prolonged social security pay. It’s mystifying.

A second reason I was denied was my age. Apparently, you truly can’t be this sick and get social security at 35-38.

Third, they pulled from my record that I rode a bike. I know, I know. You’re thinking .. you rode a bike?!

Yeah … at physical therapy. For 5 minutes. Without the power on.

So the administration went through 900 pages of documents and pulled from my physical therapy sessions that I was “riding a bike” and was therefore not credible.

Want to know what’s not credible? Combing through someone’s medical record and taking something out of context. Being able to ride a bike for 5 minutes at your physical therapy’s office with no resistance at all does not constitute a person being well enough to work an 8 hour day. The administration pulled that piece of information without context. It was like they were searching for something. So disgraceful.

Fourth, they discredited my doctors. This is the one that I am always mystified by. How do people flat out discredit a doctor’s opinion? It makes no sense to me how a judge, who studies in law, can tell a doctor they are full of shit? What was stated was that in some instances he said I could walk ten minutes and others less than that. Well, guess what. Some days are better than others. I think the point that they missed was that it’s never over an hour combined. I just don’t understand how they didn’t look at the overall picture that was presented. Instead, they went searching for something to discredit me for.

In next week’s blog, I will tell you how I think that you can help your case to win social security based on my experience. I don’t want what happened to me to happen to others. Just think of me as I am living out of my car …

Be well …

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Madeline Fresco is a novelist who lives in San Diego. She is the author of CROSSED THE LINE, available for Kindle at Amazon.com, for Nook at Barnes & Noble, and as an ePub at other eBook retailers. You can also listen to her novel as a free, serialized audiobook atmadelinefresco.com. Her second book THE CHOICE, is available on Kindle at Amazon. Her third book ANGUISH, is available for Kindle at Amazon.com

Social Security Denied At Hearing Level

planes and trainsSocial Security denied at the hearing level.

I just don’t understand. I really thought that I would win. I guess, because I deserved to win, plus everyone told me that I would.

I am so screwed now, it’s ridiculous. I have no income. I truly can’t work. I can’t sit for more than five minutes and I can’t stand for more than 2 hours a day – and that’s just once. After that, I need to lay down in one hour intervals. My mind is spacey — always distracted from the pain. If I do try and go out, I’m pretty much laid up for the rest of the day. When I say go out, it’s usually for an hour. Coffee, or maybe a drink. Hardly ever food because I can’t tolerate to wait for it.

Apparently, not being able to bend at the waist, tie your own shoes, or put on your own underwear did not sway the judge. Apparently, not being able to remotely do your own grocery shopping, clean your own house, or get yourself to doctors was convincing to this judge. Apparently, being essentially home bound was not enough for this judge to approve my condition.

I’m so disgusted right now.

If I try and get work now, my simple, few joys in life will be gone. All my energy will be to put a roof over my head and food on the table. My joys of listening to the audiobooks I have will be inundated with more distracting pain from trying to work.

That’s IF  I get a job. Who is going to hire a nurse that can only work from home, in two hour intervals, for a max of 4 hours a day?

I simply just don’t understand how this could happen. I spent my life taking care of other people. I did everything right. I’m such a straight-shooter. I didn’t cheat on my husband, tried to do right by my parents and brother, and this? I’ve been patient over 3 years to get better. No. Not that. Then, despite my quality of life being shit, I now have to worry about where to live, how to live, and how to eat? It’s truly mind-boggling.

My next few posts will be on what the denial letter actually said, which is a whole other conversation. After that, I will offer my advice for people who are starting this process so that they won’t make the same mistakes I did. I truly can’t believe that I had a company, Allsup, represent me for over a year, who had no fucking clue what they were doing and offered no tangible advice until it was too late.

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Madeline Fresco is a novelist who lives in San Diego. She is the author of CROSSED THE LINE, available for Kindle at Amazon.com, for Nook at Barnes & Noble, and as an ePub at other eBook retailers. You can also listen to her novel as a free, serialized audiobook atmadelinefresco.com. Her second book THE CHOICE, is available on Kindle at Amazon. Her third book ANGUISH, is available for Kindle at Amazon.com

I Will Be Trying Flector Vs Lidocaine Patches

So I have become quite addicted to wearing my Lidocaine patches. I started a few months back to try 30 days worth of Lidocaine patches to see if it would break my pain cycle.

It does actually make me feel better. I mean, it doesn’t cure me or anything, but it does make me feel better.

However, at the end of the 30 days, I was supposed to stop. I just can’t bring myself to stop relying them.

Yet, I wonder? What makes me feel better, the Lidocaine or the fact that it comes in a patch form? I wonder if my back just feels a bit more stable having something back there. Kind of like the tape that athletes use. Therefore, I asked my doctor to write for Flector patch, which is an anti-inflammatory patch. That way I can try a different class of drugs in patch form and rule out if it is medication, sensation, or both. I’m gonna start tomorrow with a five day trial to see if I can determine what makes me feel better. I had a hard time convincing my doctor, he just wanted to write for a Fector cream, but I insisted. He completely was not paying attention to my rationale.

The unfortunate part of this is that my new insurance, which is shit, does not pay for Flector. There is also no generic. That means that a 30 day supply is $300. I got 10 for my trial, but I can’t believe it. How can they not cover it when there is no generic? My Synthroid, Calcitriol, and Lidocaine patches weren’t covered either. It is really quite shocking. I can only imagine what will happen when I need a new MRI or a CT. I’m confident that my insurance company will not cover it or deny authorization.

The other shocking thing was the pharmacist. I had an inkling that the Flector patches would not be covered since my Synthroid, Calcitriol, and Lidocaine patches weren’t. So I asked the pharmacist if there was a generic of Flector patch or any generic anti-inflammatory patch. He said there was, which was the Lidocaine patch.

This is completely inaccurate. Lidocaine is an anesthetic. Flector is an anti-inflammatory agent. These are two totally different mechanisms. I can not believe that a pharmacist gave such horrible advice and completely inaccurate! What if I hadn’t known this! My God! It’s not life threatening or anything but these are two totally different classes of drugs! All I have to say is be careful people!

I will report back next week how my trial goes. I have to be judicious though and not take any chances. My commitment needs to be at it’s strongest. These medications are now too expensive to be willy-nilly about my plan of attack.

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Madeline Fresco is a novelist who lives in San Diego. She is the author of CROSSED THE LINE, available for Kindle at Amazon.com, for Nook at Barnes & Noble, and as an ePub at other eBook retailers. You can also listen to her novel as a free, serialized audiobook atmadelinefresco.com. Her second book THE CHOICE, is available on Kindle at Amazon. Her third book ANGUISH, is available for Kindle at Amazon.com

Support Group

I hosted a support group last night for the second time. It went very well. I was supposed to have two people come, out of the 30 that joined the group, but only one of them showed up.

The other lady said she was going to go and then cancelled last minute. At least she let me know that she was cancelling before hand.

However, what was weird about it was after she had cancelled, she rewrote back and asked how many people were going. I said myself and one other.

I’m not sure what to make of that. Would she have gone if there were more people? Was she wondering if there were going to be only a few people and then it would be more manageable? I’m not sure. I’m kind of curious though what difference it made.

The woman I did meet was really great. She has Fibromyalgia and works in the health industry. It was really nice to hear another person’s opinion about how they deal with stuff. She was very active, or so it seemed, so I am happy for her. She ran fairly late, even though I stated in my group bio that when there are meetup’s people need to be on time. Since it was only us, she pushed it back from 6:00 to 6:30, but then didn’t show up until 6:50. Had she not let me know, I would have had to have left after only a few minutes of meeting her. Oh, how I long for the days when we didn’t have cell phones and people had to be where they said they would be when they said they would be there. I wouldn’t care as much if I wasn’t sick, but I am. Our society today just lives for themselves, not realizing that that is how they come across when they are late like that. It is somehow okay that someone is technically 50 minutes late for an appointment just because they have the ability to tell you that they will be late. I really wanted this support group to abide by the rules that people are in pain, myself included, and only have a limited amount of time to socialize. I can’t wait all night for someone to show up, and I’m sure others are the same way.

You know why I also want people to show up on time? Because I really liked this lady and then when the designated time was done, I didn’t want to leave. I was then having a debate with myself on whether or not I could tough it out. Unfortunately, as we all know by now, I am always worse the next day than I am at the current time of an event. However, it wouldn’t have been as big of a deal if she had been on time. I had to leave at 7:30, because of my back, so really, I only got about 40 minutes to talk with her.

Plus, my two friends showed up because they didn’t want me sitting alone, which was sweet, so I really didn’t even talk to the lady that much.

Oh, well — enough of my rantfest. I liked her, so we actually made plans for a few weeks from now. I’m looking forward to it.

However, I am a little bit sad today. I know it was a big deal that I reached out, and am trying improve my social circle here in a new city, with a lot of physical restrictions, but I’m sad. I’m sad because no matter how fun last night was, how proud my friends were of me, I’m still in pain. I still hurt all the time. I hurt today from yesterday’s 1.5 hour excursion. Is it worth it? I’m not really sure anymore. I’m just so exhausted from hurting all the time. I’m tired of hurting all the time. It’s annoying, and anger-inducing, and sometimes I just want to scream. I can’t even scream because it would hurt me too much. It just feels like no matter what I accomplish: making it to doctors appointments, starting support groups, walking a bit — I’m never actually accomplishing the feat of not being in pain. It’s always there and it’s a fucking nightmare.

I just feel lost.