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

Good graphic that explains our chronic pain feelings

Chronic Pain feelings

 

 

Thanks again to Chronic Pain Support group for posting this.

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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

Still not recovered from PT

field of poppiesIt’s been two and a half weeks since my last PT visit and I’m finally able to sleep through the night without being woken up from the pain. I am able now, for a few days to remain in bed when I wake up and not be in pain. That’s really, really nice.

However, my walking has remained severely limited. I’m about 2000 steps below what I normally do. For all those people out there who are worried about their weight, let me just say this. I’ve gained 3 pounds in the last 2.5 weeks. So, at this point, that’s perhaps what this 2000 steps equates to.

Besides the increased pain and the lack of concentration because of it, I’m bummed because what the loss in steps means. I was working so hard to be able to venture outside of my apartment to go do stuff. I was hoping to be able to walk to the bars come football season to at least be able to watch a quarter there. It would do me tremendous mental good to be able to be around people again. I’m so isolated and so lonely, I was so looking forward to it.

I’d rather be able to do that they have a modicum of increased range of motion.

I go again tomorrow and I am quite frightened.

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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

Feeling a bit down

I’m just feeling a bit down today as my friends came to visit and now they are gone. I have had some visitors lately and it has been so super nice. As I’ve recently posted, my family was in town, and then now my friends.

It just goes to show how very lonely I am. I spend day in and day out without seeing anyone and it is just really tough. I didn’t get to go do any of the stuff that my friends came into town for — to go see the baseball game and then get dinners and such. They also went to the beach one day.

However, just to have them come back in the door and chat about their day was just so lovely. It made me feel like a real human being again. We could chat about something other than my pain. I could just be quiet and listen to them happily chat away about their good times for the day.

Yes, of course I wish I could have gone with them, but even just to be around people living life was just so nice.

The PT setback is just really an absolute bummer. I’m having such a hard time even standing. My steps are down by 2000, so my dreams of walking a few blocks to the bar to watch football games looks like it is out of reach for awhile. I worked so hard to get my steps up for that. It’s the hugest disappointment.

Then there is the pain. I can’t sleep. I don’t feel like eating because the pain sucks so bad. The worst is that it wakes me up and then I can’t fall back asleep.

I really just don’t know what to do anymore. I’m so lonely and so miserable it is just tough to find a reason to get up in the morning anymore.

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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

Family Visit Went Great

flowers and butterfliesIn my last post I stated my family was coming to visit. Well …

It went great!

I had so much fun.

Logistically, I was a bit nervous. As my now 5-year-old niece likes to say “your house is kind of small”.  I wouldn’t care at all if my family was staying with me if I had a big house, but my family room is small! She’s not wrong! I was worried two queen air beds would not fit — but they did! I was also a bit worried that with 5 people in my tiny apartment we would be tripping all over each other.

I am quite pleased to report that that didn’t happen. The adults and kids were very cognizant of picking up after themselves or kicking toys under stuff to reduce the chance I would trip. That’s a huge concern of mine because whenever I do trip it’s beyond painful. Plus, I would be slightly embarrassed about screaming out in pain if I tripped. I don’t even have to fall down, just the jarring nature of tripping is excruciating.

Ultimately, I was beyond thrilled that they stayed with me. It was way better than the last time when they went to a hotel. I got tons more time with everyone and I could better plan when to lay down.

The kids were really wonderful about not jumping on me or tugging at me. They really did understand that Auntie is delicate and that went a long way into making my weekend more enjoyable — I could actually relax around them. I trusted them quite a bit, but that didn’t stop me from acting like I was in the mafia — always wanting my back against the wall! No surprises from behind!

beautiful-flower-wallpaperThe adults were great, too. Obviously, the children doing so well with Auntie is a direct reflection of the parenting by the adults. My sister-in-law and my brother did a great job of letting me lay down when I needed to and I didn’t feel too badly about having to do it. I could have laid down more, but I was just so excited to see everyone. Me not laying down more was on me, certainly not them. Besides, I am very happy to report that even though I pushed it, I am not the worse-for-wear after the weekend! Yay!

There was one incident when the 5-year-old came into the bedroom and started grilling me on my laying down habits which was slightly upsetting, not because of her, but because it’s just upsetting that I have to do it. Plus, kids don’t know how to read when someone is getting upset — the interrogation did not end swiftly! It’s okay though. I had no problem answering her questions, it’s just, like her, I have a hard time understanding my situation and when I have to reiterate it to those big blue eyes of hers it reminds me of how much I’ve lost.

wild-flowersMy favorite parts of the weekend were coloring with SK, brushing our teeth together, and texting. Yes, texting. She loves it. The nice thing was I trusted her enough to let her lay in bed with me and she was unbelievably sweet. We talked abut it for a minute or so and she did a good job convincing Auntie. She made up a rule that she would not cross a line in the bed and I was impressed that she kept her word! I mean, she’s 5! So it was really nice to lay next to her and text back and forth. SK likes the emoticons and she makes me happy with the stories she makes up about the little icons.

With Little Man, my favorite parts of the weekend with him was brushing our hair together and fireworks. He let me brush his hair for him and then he ran around reporting to everyone how smooth his hair was. My heart was filled with such joy! He also really liked the 4th of July fireworks and watching his face made me happy. SK tried real hard to participate, but at the end of the day, she just doesn’t like the noise. I was proud of her for trying and even more proud of her for just coming to the conclusion that she didn’t have to be out there with us.

Favorite kiddo lines from the weekend:

SK (after a minute of just staring at me) “I want you to drive back to Arizona with us”

SK (walks up from family room, hugs me) “I really like you, Auntie”

– both of these were just the fucking sweetest –

Little Man (in regards to them going to the pool. I don’t have this one exact) “We have to wait for Auntie, her suit’s not on yet”

– this one made me happy as he didn’t want to leave me behind! –

Little Man has one of the sweetest hearts around.

1267168-beauty-flowerOverall, the weekend was fabulous. I really, really loved having people around. I get quite desperately lonely as I am by myself almost every single day. Just to have laughter in the house and things happening was so wonderful. I miss people, I especially miss my family. I won’t lie to you, I sobbed uncontrollably Sunday night because I already missed them and it was just so nice to have people around. It’s one of the things that is hardest about my situation — the loneliness. The pain of course is horrible, but coupled with the isolation it’s close to unbearable at times. I try and hide it when people do come over because who wants to hear a sob story when you actually do get to spend time with people? Plus, my mom was a big complainer so I try everything in my power not to bring attention to my misery.

So if anyone is reading this blog, even though it is mostly just a journal for myself, please know that if you are worried about family coming to visit things can turn out brilliantly, like they did for 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

 

Family coming to visit!

DandelionsI’m super excited because my family is coming for a visit! I just found out on Saturday!

Oh, and they are coming THIS Friday!

They are also not very motivated so they are staying with me, in my 700 square foot apartment! It was too late for them to get a hotel room and at this point, too expensive.

Yikes! 4 people sleeping on air mattresses in my family room!

So, for those of us with pain, we know how stressful it can be for family members to come for a visit.

 

Physically:

  • Trying to/wanting to pick up the house
  • Take it easy to save spoons, although this rarely helps on the day
  • Extra grocery shopping
  • Pushing yourself because you want to keep up

 

Mentally:

  • Dealing with people not necessarily understanding your situation they want you to do more than you can do
  • Being confronted with what you can’t do or participate in
  • Feeling misunderstood, people judging you for what you can or can’t do
  • Missing them when they leave
  • Having to rely on friends to help prepare for your visit – feeling bad about this

 

Dandelions 2There is always so much that goes on in our chronic pain heads. People also don’t realize we can’t just be easy breezy. We can’t just roll with things like we used to or want to. It takes planning, help from other people, and a mental fortitude to stick up for yourself. Especially since they are staying with me, I will need to do an expert job of speaking up for myself when I need to go lay down. I can just hear my brother now “oh, you’re fine”.

Regardless of all that, I am so beyond thrilled they are coming. I love my little nephew and niece and am so, so, so happy to see them. Plus, it’s a little emotional as they are moving back to Michigan in a few weeks so this might be the last time I see them for years.

Wish me luck!

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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

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

New website — lots of work

I had to switch to a different website because the old WordPress site was just giving me too much trouble. I had to then transfer over 2 years worth of blog posts! It took more than 8 hours to transfer them all over and hours worth of phone calls to realize that I would have to do it manually as opposed to a transfer service.

 

It was interesting, moving over all the old posts. Mostly, it was sad.

 

I’ve been at this for a long time.

 

It was interesting to see how much hope I had in the beginning. Maybe as a casual reader it wasn’t as obvious, or maybe it’s because I could be transported back to that time through the posts, and remember how I felt.

 

I do know that this was my biggest fear, that I would be three years out, with no hope on the horizon, and my spirit broken. I’d like to say that I’m still hopeful, in part I am, but I don’t think it’s hope. I think it’s wishful thinking at this point.

 

I do know this. This blog helps. To put down my feelings like a type of journal. That perhaps someone, somewhere might be reading it and not feel so alone.

 

May 28th will be three years. I can not fucking believe it.

 

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 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