I hate my back

L5-S1 Annular Tears Suck!

Social Security hearing denial – the reasons I was denied May 6, 2015

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 …

 

Social Security Denied at hearing level April 29, 2015

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.

 

I will be trying Flector vs Lidocaine patches April 15, 2015

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.

 

Support Group March 12, 2015

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.

 

Excursion day # 2 with chronic pain January 30, 2015

Last night I had one of my first ventures out here in San Diego. I had a friend drive me the 200 feet to the bar because it was raining and I was afraid I would slip. I know, right? The second time I decide to try and go out in 2 months it was raining!

 

I was meeting the only other person that I know here in San Diego, a college friend from my MSU days.

 

We arranged to meet at that bar after a little bit of a scheduling difficulty. I picked the place because it was so close to my house and I wanted to see if I could make it the few feet to get there. If I could, it would mean I would have a few places I could go on my own.

 

However, he wanted to change the place to a five minute drive from my house. That sucked, because I had to tell him no. A five minute drive is too far for me to handle sitting right now. Plus, after driving, I would already be shot and would not be able to stand there for an hour. Also, I would have been in too much pain to concentrate on what he was saying.

 

I had to decline and it made me seem a little too picky. However, as we all know, we want to hide how sick we are and this was just highlighting it.

 

We met at the bar and he brought his girlfriend. That threw me for a loop. I was prepared to speak to one person, not two. When there is more than one person, my already distracted brain has a much harder time. My conversation skills, therefore, were a bit lacking.

 

Besides, I haven’t had a real conversation with someone who didn’t know my condition since this all began. My friends in San Francisco watched as I progressively got worse, and we all just accommodated from there. This, this was from the get-go.

 

The only thing that was tough was that they weren’t very conversational either. I had to carry the conversation a bit of the time, which taxed my already troubled brain. I had so much to think about that normal people don’t! You know! I had to think about the bar, how I was standing, how my back was exposed to people walking by, how I was cold and therefore my spasms were worse. There was also so much to see! I am so very under stimulated in my own house! Also, in a nice way, my friend kept texting every ten minutes, checking up on me. so much going on that normal people who go out don’t have to think about. Plus, I had to constantly check the clock to make sure I wasn’t over doing it. Then there is also the amount of energy expended thinking about your own back. How’s it doing? Is it starting to hurt so bad you will be in tears tonight –things like that.

 

Ultimately, it was a very good experience. I was able to leave my house for the second time in two months and it was overall a success. I have two Lidocaine patches on my back today and have already dosed with some Motrin. I know I will be in more pain today, but it was a mental win.

 

How do you manage when you go out?

 

Move Complete – Part 2 December 8, 2014

So once I got here, I thought everything was fine. I arrived on a Saturday evening and while people moved the RV to a safer location to park it, I kind of wandered around the new apartment, taking a look at where things had been placed and such. I actually felt pretty good?? I’m not sure what happened after that. I went to bed that night and woke up the next day sore, but not too bad. I had a big Green Bay game against the Patriots that day and don’t remember being in too much pain while I laid in bed watching it. I had to watch it on my phone because, of course, my internet did not work right off the bat. Thankfully, I have Verizon and they have a deal with the NFL that you can stream it over your phone. Needless to say, my phone bill will be big this month because I blew through my data plan. However, it was well worth it to see that game.

My point is, I don’t remember to much pain just laying there. Then, I went for a walk. That may have done it. We walked all the way around my complex. I’m not sure if it was the slight incline or if it was the length of the walk (about double what my biggest walk was in San Mateo). However, the more I have thought about it over the last few days, I’m leaning toward the walk. Either that, or the adrenaline wore off or the swelling in my body got worse after 24 hours. Pretty much that night was very painful and started a cascade of pain. I had planned only on going for a very small walk, just to poke my head outdoors, but the person I was with kind of distracted me and I kept going. Again, I never feel the pain while I am doing something, it always seems to settle in later? That’s why it is so hard for me to gauge things sometimes and why I have such a mind-fuck going on when I do something (why I’m so scared to try things). I just wanted to get an idea of where I was and such. Like and idiot though, I did it, and now I can’t tell what caused the pain.

Now it’s been just over a week since the move and I’m still doing terribly. I love to talk to my 4 year old niece over the iPad on FaceTime, and I can’t even do that. I spoke to her for about 45 minutes yesterday and spent the next two hours in bed crying. I love that little girl and it kills me that I can’t pick her up, go visit her, or kiss her. All I have is the ability to talk to her over FaceTime and now I can’t even do that. My brother offered to bring the kids out in the next few weeks, but I have to decline. If I can’t even talk to them on the iPad for 45 minutes, then I don’t think it’s such a good idea to see them.

I’m very sad over what is going on. I’m trying to keep in mind that I just undertook a big endeavor, and that recuperating will take time, but I’m just scared. Ever since I first got hurt, I just keep getting worse. Every time I have injured myself since in regards to my back, I get somewhat better, but I never return to my previous level of functioning. I hope I do this time.

This blog was made possible thanks to Godaddy coupon 149scott and some Petco coupons. I just used the Petco coupons to get a new fake-grass potty mat for a dog. It worked well. You will like the coupons.

**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

 

Almost move time November 26, 2014

Almost time to move. The big day is on Friday.

It’s a bit nerve wracking, to say the least. I feel like I am dead man walking – waiting and knowing of my demise. I fear this trip will make me so much worse that I won’t be able to tolerate the pain at all. I fear being worse than I am now. I fear not being able to concentrate anymore because the pain is bad. I fear not having any reprieve.

This will all be done this week though. Sunday, hopefully, will be fine. It is the day after the drive. I have my Green Bay Packers game and I hope I am able to get lost in it and deal with whatever comes my way.

Please wish me luck, I really need it. I haven’t been this scared ever in my life. I’ve had a sense of dread before, but nothing like this.

Thanks to you for reading my blog — here is a GoDaddy coupon and some Petco coupons to say thanks!

**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

 

Busy week ahead of me November 11, 2014

I have quite the busy week ahead of me.

I will be moving in two weeks to sunny San Diego. I have a bit of help down there, so that will be helpful with my back. I’m terrified of getting down there, which is a whole other story.

This week will be tough as I have to pack again. That’s always hard on my back and hard on my psyche. It won’t be as bad as it was a few months back, because a lot of it is still in boxes, and was weaned from how much stuff I had before.

I have tried to break the rooms down by the day.

Tomorrow I have friends coming over to help me pack my clothes. That will be the hardest. I feel like I need to wean through the clothes again because I haven’t seen the apartment I am moving to and I don’t know how much will fit. I can’t do any of the packing myself so it will have to be pretty much straight forward. It will be a quick go or stay. If I can at least wean throw 1/4 of it, that will be good. Plus, it will save me the space and I can put other things in its place.

Wednesday I have a friend coming over and she will help me pack my kitchen, plus all my documents for MetLife and Social Security. That has me a bit nervous, because if I need that stuff, it won’t be with me. As for dishes and stuff, again … weaning. I will wean it down to the bare minimums. I just don’t want to have to pack that stuff again some day.

Thursday will be lose ends. Pretty much anything we didn’t get done the last two days. I have some stretching blocks, my dvds, and remotes and such. Just kind of random stuff.

Then on Saturday will be my bathroom stuff. I will be going au naturel for the next week or so.

That’s pretty much it. Then it will be a week and half of not much stuff. That’s okay, I don’t require much anyways.

So to summarize, just trying to break it all down to easy, manageable days so as to not overtax myself (the irony is I don’t want to overtax myself pointing at what everyone else should do — man, my life is terrible). Tomorrow will be the worst. I’m not sure how much help that group of friends will be, or if they are really even up for doing it. Last time they all just sort of sat around drinking and chatting and I was left there not wanting to be an asshole and be like “I can’t move anything myself! Please! I need help! Stop talking!”

I’ll let you know how it goes next week.

For your benefit, here are some great deals. Get your own blog for just $1.49 using this GoDaddy coupon 149scott. If that’s not up your alley, try out something for your pet with these Petco coupons.

**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

 

Too much football! October 27, 2014

My back can only last for so long. I have to time my activities around my back. Usually I can do one activity per day. Also, my activity isn’t super exciting. It might be to be able to stand for half a football game, then lie down, or maybe have a friend come over for a few hours where I stand and lay throughout the visit.

As everyone knows, I love football. I have been a fan of the Green Bay Packers since 1996. My husband is a Lions fan, and we both grew up in Michigan. I only tell you this because that means the NFC North is the division that I enjoy watching the most.

Well, today was too much football. My game is the Sunday night game. I already knew that it was going to be hard to make it all the way to the Packers game without any pain. I mean, really. I always have pain. I guess what I’m trying to say is I wanted to try and make it to 5:30 pm with as much reduced pain as I could manage.

Didn’t happen.

The issue is, my day started at 8:30 in the morning with the Lions game. Who airs a game at 6:30 in the morning? I ended up watching most of that. Then, the Bears were playing against the Patriots for the 10:00 am game. Well, I had to watch that. Then, there was the Eagles and Arizona game. I really kind of wanted to keep my eye on that game as well.

Simply, just too much football.

It’s too much to have 4 games in one day. I mean, usually, I watch a game, and then keep my eye on another. This was all games I wanted to watch with their own time slot.

Too much!

Also, ugh. Stupid Detroit Lions doing the unbelievable and coming back from a 21 point deficit. On a side note, really Atlanta? You didn’t score AT ALL the second half of the game?!

That means that the Lions are still ahead in the division.

That’s annoying.

**This blog is made possible thanks to GoDaddy coupon 149scott and thanks to some Petco coupons. Feel free to start your very own blog or get some nice new toys for your doggie.

 

No-shows are harder when you are disabled October 15, 2014

Good job showing up, lady

Good job showing up, lady

I had a no-show today and while it sucks for people who are not disabled, it is so much worse when you are. I have a cleaning lady come every three weeks to help with the garbage, vacuum, and clean the bathroom.

She was supposed to come today.

Sadly, no friends came over this week, so my trash has really backed up and, lately, I have had a spider problem. So there are little spider carcasses all in my carpet. Needless to say, I really, really needed the cleaning lady to come over today.

The thing is, she didn’t show up, and she didn’t call. I had to text her to find out why she wasn’t here. The really aggravating part was she said her car broke down (which I kind of don’t believe), and that she was going to call me. The reason I don’t believe this is how do you forget to tell your clients that you can’t show up? It’s so frustrating.

It leaves me to try and scramble for someone last minute to come to the house. She can’t even come until next week. Now I have spider guts on my carpet for three weeks because I can’t get to them, and I really, really need someone to mop the remains up off my bathroom floor. It’s gross. Now I’m a gross person because my cleaning lady didn’t come over.

The thing is, when you are disabled, things aren’t niceties, they are necessities. It would nice, if I was well, to have someone clean for me. No, I need someone to clean for me or I sit in filth. If someone doesn’t show up for a person who is well, they could be irritated, but they can just as easily say fuck it, get the vacuum and clean up. They for sure would have already vacuumed up all these dead spiders.

I also was having a wonderful FaceTime conversation with my niece and I had to let her go because I thought the cleaning lady would be here at any minute. So I also had to disappoint my niece because this lady didn’t show up.

I’m just so aggravated by the situation.

How do you feel when people don’t show up? What impact does it have on you?

** Here, have a GoDaddy coupon and some Petco coupons to cheer up your day. Get your own blog for just $1.49 and rant and rave about what you want. Then buy your cute pet a nice new toy for consoling you after you get all upset today about your no-show.