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

Let’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.

Life, exciting life

It’s been a month since I posted, but I could have posted dozens of times since then with all that’s been going on. I’ve just been too exhausted, and it’s been a whirlwind of seeing my doctor and therapist several times and starting a new medication (Risperdal) and getting ready to go to CA to see my kids graduate. I’m still yet kind of out of it today, but not completely (especially since getting a nice big fattening dinner, thanks to a very kind friend) so I’m determined to post at least a little post. To sum up:

• I finally got a court date for my disability hearing! Yay! It’s in August.
• My anxiety levels were still going up, and I hit a level “10” several times and only through the help of friends did I manage to not go to the E.R., which would have been expensive. A level “10” for me means that I’m not functioning, barely able to talk or not able to, have difficulties moving around my room etc., very little or no ability to concentrate, racing thoughts, difficulties sitting up and moving my head an difficulties or an inability to walk due to extreme dizziness/disorientation, and it lasts for hours or on and off for a day or more.
• My doctor put me on the Risperdal and it was a lucky first time hit. It helped a lot within just a week. The only downside is that it seems to inhibit the receptors in my brain that tell me when I’m full. So far I just drink a lot of water to make up for it, but I did gain ten pounds of the 25 that I’d lost in the few months before. I think I have it under control, unlike my awful experience with Zyprexa, which helped my anxiety but made me really really hungry constantly. So hungry that it was pretty much really odd.
• I spent a week so excited at my upped energy levels and with the depression gone again that I overdid it and wore myself out several times.
• I was able to go to a conference this past weekend where one of my aunts was the keynote speaker and the president of the association for the year, and it was about the same subject that I majored in in college, and it was being held locally, so I got to go: along with my parents and another aunt. I definitely overdid it, even though I only managed to attend about half the conference. It was kind of a once in a lifetime thing, in a way, and I just didn’t want to miss out. So….
• I hit a level “10” again Sunday and Monday, managing to stay out of the hospital (an Ativan would have been nice, but the withdrawals and possible retrograde amnesia after wouldn’t have been).
• So, I was stupid and after about 12 good hours decided I’d try and help do some yard work with friends, for a friend. I was basically useless and couldn’t even put a shovel into the ground. My best friend, fresh off a cruise and who is still feeling like she’s on the ocean, got out a ton of weeds. I watered the ground underneath the weeds to soften it and got mud on myself (which is usually fun…maybe it still was) and after about 30 minutes it felt like I’d been hit by a truck. I did manage to get the weeds into a garbage bag. I guess my service will have to continue to be in other ways.
• But, in a few days I’ll be with my kids and friends and family again. I’ll have to keep it lower key, which seems to be the theme of the past year in a much greater degree than I’d ever anticipated. Learning my limits much? Yuck.
• The good part: I went a week with no nightmares, and I’ve had significantly less since starting the new med.

Changing Meds is for the Birds

When you’re on psychiatric medication, it’s a given that at least every few years your medication will “wear off” i.e. not work as well, and that your psychiatrist will need to find some changes for you. I will not try to outline every problem I’ve had with every medication change in just one post. That would take a l*o*t of writing and trying to remember lots of random stuff. But let’s just say that I’ve been on one particular medication for almost 10 years. It’s worked really well for me. 10 years is a long time for one medication to keep working, though. (Now remember, I’m not a doctor….notice the “liability” notice at the very bottom. I’m spouting what I remember best from what I’ve been told through several sources. This is NOT medical advice. I majored in history, people. Minors in music and French. I can’t help diagnose anything or give advice on prescriptions.)

So, about three years ago when I came to this mountain state to try to finish my degree, the nightmares that I’ve had on and off almost my whole life (at least since my teen years) got a lot worse again. So, I got put on a medication that’s supposed to help lessen the nightmares, called Prazosin. It did help, a lot. Then trying to do school full time messed up all my symptoms. I’d be sitting in class and my fear would increase even though I couldn’t think of anything I needed to be afraid of. The harmless people around me suddenly seemed scary, even though generally I’m not that easily intimidated by people. I was exhausted and I’d go to bed around 4-6pm and sleep until 2pm the next day, and my roommates would be worried whether or not I’d eaten, and I’d wake up with my blood sugar abysmally low and unable to speak or walk straight. I had several bouts of sleeping 32-36 hours straight. When I was married, my ex-husband would call this “comatose” because he could say my name and gently shake me and talk to me and pick me up a few inches then let me drop to my pillow and nothing would rouse me. I’d be in a deep, deep sleep because I’d get so tired. My therapist in Los Angeles had done her Ph.D. Research in anxiety, and she explained to me that high anxiety, whether from good or bad things, tires people out. So, those with high anxiety problems are often tired….all the time.

Hmm, back to the subject. I had wanted to finish my degree so that I could at least be a substitute teacher in CA and work on the days when I felt up to it, and rest on the days that I didn’t. I also figured that school would be a good “dry run” because I had to go full time in order to get a Pell Grant, and I could “rest” when I wasn’t in class. Instead I had some of the same problems I had when I’d come home from France for my Junior and Senior years at BYU years before: sometimes I was okay, but increasingly I couldn’t concentrate, at all, on my readings. I could “fake it” pretty well in class, for a while, but then I crashed. The fatigue increased to where I couldn’t make it to class much anymore and if I did, my insides felt like there was an earthquake, and even if I though I looked okay on the outside, complete strangers would ask me if I was okay and if they could get me something to eat or find somewhere for me to sit down. I had been bound and determined to finish school, but it wasn’t going to happen.

This was about medication, huh?  🙂  So, it’s cheaper for my parents, who are helping me out (huge blessing) for me to be here than in CA with my kids. Not going to go there right now. Worst thing of my life. My kids are in great hands, though. Still worst thing ever. But…I started my application for disability, for the second time. I’ll tell the “first time” story another day. And waiting on disability can take a very long time. It’s been almost two years now.

Last fall, when I thought I was recovering, sort of, from too much stress, things got worse instead. After about 4-5 months of not being able to wake up and the worst nightmares I’ve had since my divorce ten years ago (but there were more of them, and they seemed “real,” and I couldn’t tell if they were my reality or not) my doctor tries a few meds that gave me severe side effects. We finally settled on something for sleep, and within a few weeks I had the most normal sleep schedule I’d had since I was 22 years old. The best part? I could wake up if I needed to. No more hours of nightmares about trying to wake up, and getting taken to a different place in my nightmares instead. I could set my alarm and wake up.

We’re almost to the end of this chapter. I had several months of good sleep and getting more Priesthood Blessings (I apologize if you’re not LDS and you don’t know what this is, I can explain or provide a link later) and learning a new sort of meditation technique called “tapping” and using some essential oils, then a few weeks ago things got really bad again. This time it was racing thoughts. I do have these from time to time, but it hadn’t been this bad since I was in school, and it was worse. I felt like I was losing my mind, like I was afraid of everyone. I think part of what precipitated it was a lot of paperwork I had needed to do for various things (I get kind of paranoid about paperwork, I feel like I’m going to do everything wrong) and some stressful things in my family life. All I could do for the racing thoughts was to lie down in bed and try to clear my head, but I was having trouble getting enough to eat. I wondered if I should check myself into the hospital. I got advice from several different people over the weekend and ended up with an appointment to see my doctor. I found a ride to my trauma group before my doctor’s appointment. That group is always helpful to me, but this time especially so. Everyone in the group said that it sounded like I was in need of a medication change, and that I would be okay. So much better than however expensive the hospital or E.R. is (thankfully I’ve never had to stay in the hospital overnight) and the doctor was really helpful.

End of the story: the doctor upped one of my meds and put me on another one that I was on years ago. I’ve been sleepy for a couple weeks (only awake for maybe 6-8 hours/day) which of course also freaked me out, but it was much better than the paranoia and racing thoughts. The past couple days I’ve been feeling like I’m pulling out of the sleepiness. Also, I had a really nice visit from an uncle and aunt that I love a lot.

I do not want this to go one for the rest of my life. I’ve been told by a couple doctors that they believe I can come out of this eventually, as well as therapists. I want to believe that.

I didn’t expect to make this entry so long, but there it is. Kudos if you got through the whole thing.  🙂