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 …

****

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 …

****

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.

****

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.

****

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.

Today’s neurology appointment

Today I saw Dr. K for my neurology appointment to find out why I am still having so much pain and if there was anything that he could do.

Wow. That has got to be one of the worst doctor visits I have ever been to! First of all, the door to my room was open. He walks up, breezily looks in at us (my husband and I), continues his conversation with someone unseen off down the hall. Then, he calls me by the wrong name, Beverly, shrugs when I correct him, stating “it must have been my other patient.” Uh … okay? I then tell him my case. He is unimpressed to say the least. He literally stares at me and is like, “what do you want me to do?”

Not vacantly stare at me!

I must have asked him in three different ways if he could think of some reason for my pain. He kept saying, “it’s a pickle the situation you are in.” No kidding! I live that “pickle” every day!

He was just so unhelpful. So completely uninterested in coming up with an answer. He didn’t even try! I have never been so disappointed. It was insulting how little he cared to come up with an answer.

Madeline Fresco is a novelist who lives in San Francisco. 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

Random Ramblings: 1st time sick with low back pain

Well, it finally happened. I got sick.

I had throw-up previously, except I did not have the low back pain yet.

So it was sort of random. I woke up at 4:00a.m. on Monday night and was not feeling very well. I thought to myself, hmmm, I should go get a puke bowl just in case. Well, I only had to exit my room before it came on so fast. I ran to the bathroom and the first heave hit. Nothing came out, but it was clear I would not be able to puke standing over the sink. So I hurried to the kitchen to get a bowl. I had another heave with the bowl, and that did not work either. I hurriedly squatted down and finally threw-up in the bowl.

Wow. Did it really hurt my back. It tensed every muscle in my back when I tried to throw-up in the bathroom sink. From top to bottom too. It wasn’t just in the lower back. I was surprised though that the crouch position was better, as it is very difficult for me to get in that position in general. I think a lot of it had more to do with the arch of my back more than anything else.

Today, Wednesday, I have to say the left side of my back is doing much better. It’s only been a day and a half, maybe two depending on how you look at it.  The right side, as always, is pretty shot. Although, most of my stretches went fairly well. I haven’t gone for a walk outside though, sadly, because it has been raining here in San Francisco. It’s sunny right now, so as soon as I finish this blog, I’ll head on out and assess how the walking is going.

Ughh.

However, in some ways, I’m glad I got the first illness out of the way. It’s been on my mind, and I have been fighting it for so long. It’s almost a relief to have it out of the way.