Tag Archives: disability

The Little Trials: Coming off conqueror?

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snowman christmas-316448_640.jpgIt’s Thursday. I just off the phone with my 14yo daughter who is, as usual for this time of night, busy with her homework. Life keeps moving.

My life view has been more optimistic since being approved for disability.  I’m not even sure I blogged about that! It was such a weird feeling: relief, but still with the unknown financial aspect that was finally communicated to me this last week. I was so happy, and the worst was behind me, but…there was that 60 day window they had to figure out what I’d get. I also was unsure as to when: so was my lawyer. Lots of big possible time frames.  I am so grateful that this is all done and behind me. I’m also grateful for the “little people” at Social Security whose job it is to do this sort of thing. Sounds like a lot of stress to me.

So, as getting around in the cold was the theme of my last post, so it is with this one. Thankfully I haven’t had to deal with the cold, biting wind again since then. It’s been cold, but without medication issues and without the wind it’s actually possible for me to walk around in the cold and even sort of like it. The past two days I did a lot of errands getting on and off the bus and walking distances of up to 1 1/2 miles/time. I’ve been feeling pretty well this week. Today I really needed to rest from it, but I’m so happy with my ability to get out and get some things done. I think that when it comes to my morale, having snow on the ground makes me happy and somehow makes it easier than just the cold without the snow, even if there isn’t a lot of it. It also helps that there are Christmas decorations everywhere. So much more cheerful.

So I’m feeling extra grateful today. Today was a clear-cut “need to rest” and also a day where I felt like I could pat myself on the back for having done some semi-hard things during the past two weeks.  I still don’t know for sure if I’ll be able to get a car with my disability back pay, and to be honest I do still have my hopes up. But….I’m getting around. I’ve been feeling kind of cut off from life again the past week or two, but with the coming holidays there are a lot of things planned, so I’ll be able to get out again.

 

 

Disability Hearing: I don’t even know where to begin. Yikes.

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judgeLet’s just say that I am extremely grateful to have made it as far as I have. I would be a much bigger mess if it wasn’t for the state and county programs in Utah and California that help out people with mental health issues.

I’m also grateful for the help my parents have given me. However stressful it has been to have to rely on them (especially my step mother, who does seem to try sometimes), it would have been a lot more stressful to have had to figure out what to do on my own. I have a friend who recently moved into (then quickly out of, thanks to friends) housing recommended by the state that turned out to be a crack house. There was crack and meth galore, and he had to sleep with his phone under his pillow and his wallet in his pocket. Life is not easy for those with mental health issues who can’t work and don’t have family support.

So, I made it the almost three year wait to my disability hearing. And aunt, a cousin, and a friend/roommate were all there for me: and of course my lawyer, who I felt was capable and understanding. Such a blessing. I found my lawyer through another friend who works for the firm.

The judge seemed very judge-like: on her toes, intellectually astute, and thankfully for me, a wise listener. I just hope I chose to share the right things when they asked me questions. I keep going over it and wishing I’d clarified things more. The Vocational Expert also seemed kind and astute, but quite a bit at the mercy of the Medical Expert, who frankly scared the heck out of me.

So, my lawyer thinks that things ended up well (I hope!!!) but the middle of the hearing I was absolutely sure we’d end up having to appeal. So, why is it that so many people who truly qualify for disability and can’t work end up getting denied? I couldn’t tell you for sure, but I can relate this small experience that could possibly show some of the reasons why.

The Medical Expert (not sure if that’s the exact term, but it will work for me for now) seemed “nice” enough and has probably had a good enough career helping people out. However, when it came to reading and understanding the 20 years of medical notes from my doctors, he seemed to take soooooooooooooo much out of context. And I was supposed to be quiet, of course (probably best that way, protocol for good reasons etc.) but then by the time it was my turn there was no way I could correct every bit of misinterpretation of my records from him. I felt “ready” for the hearing, but even I don’t remember everything from the last year of my life that I told my doctors that could be misinterpreted. So, here I’ll try to clarify a few things he said:

  1. First of all, I’m not sure why he decided to rank my ability to do certain tasks and work so much higher than the doctor did that I’m seeing right now. Really, who knows me better? My own doctor, or this expert who sees me for one hour during the hearing?
  2. He kept noting my excellent social skills, from evidence in his notes. So what if I can lead music and lead a congregation in hymns at church? Did he read the months worth of notes about all the church I had to miss and how they had to have several people ready in case I couldn’t make it? So, the efforts of my bishop and the ward music coordinator to help keep me feeling like I had some use in the world somehow prove that I’m capable even 80% of the time?
  3. “She was even in a choir.” Yes. So, the choir I’ve done on and off here and in CA (several seasons) but have had to drop out of counts as the ability to work, especially since it was only once a week for three hours, and I couldn’t make it often enough anyway due to health issues?
  4. “She talks about taking a 6 week class through NAMI.” Yes, the 6 week class, once a week, for the National Alliance on Mental Illness that I haven’t been well enough to take? There isn’t anything that I can guarantee that I can make it to.
  5. He was very big on my having adequate social skills and “two blogs.” The two blogs are my “something to do” that I can do at any time of day or night that help me feel needed and….give me something to do. But I can’t consistently commit to anything due to my health. So, when I’m not feeling disoriented and I’m at home, just what am I allowed to do that doesn’t show that I can work? And my social skills: they don’t help me when I have tremors and can’t speak. At the many jobs I’ve tried to do because I was determined to be able to work I kept getting concerned coworkers and bosses and customers (when that applied) wondering why on earth I was trying to work. I swear that it is those who try the hardest who end up getting the most shafted because we show a “willingness to work.” Even if I had to stop working every time I tried. And I kept trying again because I thought…maybe with this new med or this new doctor now that I’ve moved I’ll be okay.
  6. I showed a “willingness to travel” because I go to see my kids in California. This one is just unacceptable. Do I have to be comatose before I “can’t work?” When I’m in CA I have the same symptoms that I do here. Also, I have to be careful who I get a ride with because they need to be understanding about my sensitivity to sounds (keeping the radio down) etc. Sounds obvious, but it’s not always easy to find a ride just when I need one and when I’m feeling okay.
  7. This one I understand: he wondered why I hadn’t spent time in the hospital or ER. Thankfully I knew how to respond. About 7-8 years ago I did have to go to the ER, about 4 different times. It was either over issues with medication or uncontrollable shaking and an inability to take care of myself. I’ve learned a lot of shortcuts to help prevent it now, but I’ve felt probably half a dozen times in the past 2-3 years like I needed to go, but I knew what the bills would be like. I’ve struggled for periods of at least a week or two. But I have a really, really good support network. I call friends or (LDS things: visiting teachers, home teachers….ways we have in our church of taking care of each other) and they bring food and sit and talk with me until the stuttering stops. I sleep for several days until I’m better. I’ve heard a lot of stories as to what mental hospitals are like, and I talk with my doctor and bishop, “will that really help?” because some are better than others.  I don’t have voices that talk to me, so I don’t really need people hovering over me, but there’s no use sleeping a bunch somewhere else with strangers when I can sleep at home. And I know they’ll just give me an Ativan at the E.R., which helps in the short run but not in the long.
  8. There are so many treatments I could get if they give me disability (ones I could pay for with my back disability pay) that I can’t right now. I’ve been researching some of these for years, and other more recently, but I feel like if I get this help I can actually do something about my PTSD. This is a mental illness that doesn’t have to last forever: my doctors agree on that. But if I’m constantly in this state of waiting to possibly be dropped by the side of the road, I don’t see how that can happen.

Venting over. Who knows how I’d do if I had to evaluate anyone from a big stack of notes. I think it’s more the process that I’m not understanding at the moment. Should I have subpoenaed my doctor? Would that have helped? In any case, the judge didn’t seem to agree with the Expert so she kept questioning until he had put my ratings more towards “can’t work.” And I suppose this sort of thing would be scary no matter what. I’m rather grateful for the judge and my lawyer. My lawyer knew just what questions to ask me so I could share my story/symptoms better than what the Expert was representing. Hopefully it will go okay and I won’t have to appeal. Thank goodness for lawyers.

Isolation

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tree-738816_1280I just got home from spending 6 weeks in CA: it started out as a trip to be with my kids for their middle school and high school graduations, then turned into a longer trip in order to go through my storage and try to find a way to get some things back up here to Utah.

I do a lot in order to not feel isolated and lonely, but I think it might be an inevitable part of being disabled. I have two blogs, I have lots of friends, I try to get out every day even if its only a walk to the store or pharmacy. I try to take the bus different places. Being in CA was less isolating for the most part because I had a car and was really busy trying to both get through all the boxes in my storage unit (which I managed to do) and sort them, donate things, etc. I didn’t get to spend as much time with my kids as I would have liked because I was expending a lot of energy on the storage task, and my kids are teens now and busy doing lots of other things. Then they left on a cruise for two weeks with their dad and step mom and two step sisters. Their step mom graciously asked me to dog sit/house sit for them so that I could also have a place to go through my storage.

I was good for about 10 days, I thought. I knew I was beginning to struggle, but I also didn’t want to have to spend much on gas, as it just seemed like a good idea, and as I was having huge struggles with my step mom who (it seems) seems to think I could just throw away everything. Anyway, I’m trying to get over my anger on how she dealt with it.

So for over a week I sorted and sorted and filled more than half a city owned residential recycling trash can with paper and plastic. I was pretty proud of myself. It also felt very cleansing. I started out my divorce with enough stuff to fill a 10×10 storage unit, and over the years it’s gone down and down, depending on where I’ve lived.

In some places I didn’t need a storage unit. I have most of the family photos that were taken prior to 1980 when my mom passed away. My sister has never had room for them and my brother….I dunno, he probably could have kept them. I’ve been kind of the “family historian” since I took a class on it in college and majored in history and have made it a hobby to know about family history preservation. Anyway, the storage unit fit into my monthly allowance and I’ve economized on purpose so that I could keep it. When I moved from CA to UT, I got to Utah via a ride with my older sister’s family to my niece and little sister graduating from college. I couldn’t bring much. I still don’t have much stuff here. When I moved from one apartment to the next, everyone helping out kept saying, “that’s all??”  Didn’t take very long to move me.

phone-160428_640So I’m getting off topic. But it does relate. I was so focused on the storage unit that I didn’t do much else other than go to the pharmacy and grocery store. Then around day 10 of my time dog-sitting a huge wave of depression came in. I don’t get that depressed very often: more often it’s the bad anxiety. It was very very deep, though. The positive side was that eventually I realized it was happening and remembered that I could probably at least call friends and try to talk it out. I think being away from my doctor and therapist for that long (6 weeks) was probably also not a good idea for me at this time, but getting to be with my kids was. The day before they got back the depression started to lift. The phone calls helped a lot. Doesn’t hurt that one of my friends is a therapist. I try not to “use” him for that, but he’s gracious enough to help if I need it. Sometimes my therapist isn’t feeling well herself due to a prior injury from a car accident, and (such is life, she can’t change it…) sometimes I really need to talk to someone when she’s not doing well.

So, the end of my 6 week stay was really really nice. I got to spend a lot of time with my kids. They and the rest of the group told me all about their cruise and vacation and showed me photos and videos. We spent time with some of my friends on one of my last nights, and then wandered around a farmer’s market. It was exactly what I needed.

So, coming home was nice (it’s home) but leaving my kids again is always hard. I’m realizing how isolated I am here a lot of the time, too. I keep hoping that after my disability hearing that I’ll be able to get a used car. Sometimes I think about it too much, I think. It was so much easier in CA to not be discouraged a lot of the time because even if I was tired I could just get in the car to run my errand or get where I was going. My fatigue doesn’t have to be a 10/10 to make it difficult to take the bus sometimes to get where I’m going.  Upside of the bus? I love watching everything go by and being able to remember a lot of what I see, which is more difficult in a car. I also love to walk distances, so walking from the stop to my destination is kind of an adventure, even if I’ve done it dozens of times. I always see something new. Downside again: if I’m fatigued, it can be really difficult. Dora

I feel like I could do so much more if I could just get out from under needing my parents’ help. I found out today that even after the disability hearing, a decision could take 1-4 months. I’m so tired of dealing with my sm and her impatience. It’s a miracle she’s “let” my dad help in the first place, so I’m grateful for that, but I can’t wait for this all to be over. I don’t even want to think about the possibility of being denied. If the judge could spend a week living with me and seeing what my health is like, I don’t think I’d have any trouble. I wish that it wasn’t so complicated, but it is. It could take a full three years from the time I applied to when the decision is finally made.

Rock Band and PTSD. Yup.

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Rockband-drumsetI don’t know that I ever would have guessed this, but someone at church started providing their Rock Band game during our weekly volleyball/game night, and I can’t think of a better way to say this: it kicks my anxiety’s bu*t! Every week after playing, my anxiety is practically gone, enough so that after just the first week I was thinking, “If I get disability and my disability back pay, I’m going to buy Rock Band!” Can you imagine my recovery? “Take one hour of Rock Band drums, vocals, and a little guitar a day, and your anxiety level will be low enough to get rid of at least half of your PTSD symptoms…..”  I don’t know if it would be as dramatic as that, but it’s been a long time since I’ve found anything that made that much of a difference, aside from time with friends and my therapist and doctor.

I’ve been singing my whole life. I have a minor in music, I’ve conducted several church choirs and got to conduct my college choir once out of a stroke of luck (and maybe some hard work, but there was luck involved), and growing up my favorite thing to do at home was to sit at the piano and play and sing. For some reason it’s not the stress reliever now that it once was. If I get to help out by accompanying our church choir when my hands aren’t shaking too much, I really enjoy it, even though I get excited when the better piano  player shows up.  I like to be able to be helpful, but I prefer the other person. When singing, I love to get to sight-read the hard parts. I’ve been able to sing, on and off, in more rigorous community choirs over the past years since college, but sometimes after a semester or two (what they call it, even though they’re not college choirs) if my anxiety levels get too high again, it gets to be an anxiety producer instead of an anxiety-buster. One strange thing about anxiety is that something that is helpful can turn into too much.audio-2202_640

In the most recent large choir I was in, it could be the level of the noise (even if beautiful) or the mood of the director or a sudden burst of claustrophobia with so many people in the room (or a combination of all of it) that would get to me. I’d be doing breathing or inner meditation exercises, but my hands would start to shake harder and I’d start to get dizzy and suddenly I’m overwhelmed too much to stay in the room. The most recent choir directors didn’t like us to sit down, but sometimes I’d sit anyway, because….health issues. But I still felt like a failure. I felt comfortable discussing it with the choir president, but I wasn’t sure that the directors would think it was such a good idea for me to be there, and eventually it got to be too much, so that I knew it was too much, too. So choir, the thing that helped me keep my sanity through my first two years of college, had to go again. I couldn’t sing in choir my junior and senior years of college, either, which is a very long story in and of itself. And yes, it was anxiety/fatigue. One of the hardest times of my life, when it all became serious.

So in the same way that Rutter, Fauré, Mozart, and John Jacob Niles helped me in college: it looks like Queen, Bon Jovi, Green Day and Pat Benatar may help me out of my current funk. When I’m around others, I tend to have a sense of humor and joke around a lot: but when I’m at home, I seem to be too serious, and perhaps more my “over-thinking” self. It’s so exciting to find things that work, no matter how odd it may seem. Rock Band’s drums seem to be especially effective.  They just make me happy, even if I get a terrible score. 🙂  I can live with this!

Exercise, a healthy diet, and…..Rock Band.

On that note, the FODMAP diet has been helping, but true again to my over-thinking nature, I get to where I worry about it and then my stomach hurts from the worry, and not just from what I eat. My therapist and doctor both smiled and said that was really common. The cherry on top of that info? My new primary care doctor (new insurance) has IBS as well! I was hit with a feeling of peace when she told me and I knew that she understood.

cooking-chocolate-674508_640So my stomach was bothering me a LOT yesterday. On the 1-10 pain scale, I was probably at a 6 or 7. I had some paperwork that I had to finish though, so I had to get on the bus and get back to the library to print some things out. So, what did I do? I forgot the notebook with the information in it that I needed to log into the website where I needed to print out the forms. I tried to make myself feel a little better by checking out a couple of library books. I then called several friends to see if they could help me out. The situation was getting a little ridiculous. I have had a ton of paperwork to do lately, but three weeks of bus rides just to get it done was frustrating me, because it feels like I haven’t gotten much of anything else done during the day.

On the way home, I knew it was getting time for dinner, and I just didn’t want to eat anything. It came to my mind my favorite treat that is allowed on my diet, but that I try not to eat too often, a Lindt Intense Mint bar. I thought, “I could eat one of those,” and suddenly my stomach pain was gone. Completely gone. Like that, I went from a 6 to a 0, just from the idea that I could eat one (so of course I did). I wish anxiety and physical symptoms always worked that way! (Believe me, I’ve tried….thousands of time). I was so happy that I was almost giddy.

Hey, there, Mr. Postman…where’s my court date?

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I first applied for disability in February of 2013. It can be a very, very long process. To me, anyway. Sometime early last year, my lawyer said that my disability hearing could be as early as December 2014, but at the latest it would be February 2015. So, soon. I will get two weeks notice, in the mail.

In November and December I started hoping that it might show up. Sometime last week it got into my head that “It could actually show up any day now!”  Yeah. I’m not sure that it was such a good idea to get that in my head. I am going to need something to distract me from this. Every day when I get the mail, I get mad. To the nebulous people in the disability court cloud in my head, I am saying, “Really??? Are you still that backed up? Do you have any idea what I’ve been through the past two years? Can’t you please put me out of my misery?? Please!!??”

I desperately need more patience.

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