Tag Archives: shaking

Recovering from Good Stuff

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Cinderella shoe cakeI had the opportunity to help throw a bridal shower for a friend this week. I’m paying for it, but it was worth it. There’s some more good news in that regards, but I’ll get to that later.

I had plenty of time to plan. I don’t do complicated. I also had a partner in planning who did all of the things well that I’m not very good at. If I were to be a party planner the rest of my life, I would want her for my partner. It was that much fun. She even talked me into helping her icing the cupcakes with one of those fancy icing bags. I’m better at invites and games and that sort of thing.

I have to carefully allot my time during the week, but the past three weeks have been a lot better. My doctor upped my Risperidone and it’s helped a ton! I’ve been sleepy all the time, which I think is passing as I get used to it, but I’ve been awake a lot more. I’ve had less nightmares and everything else. It’s made life so much more bearable and I’ve also been more able to count my blessings without getting as depressed. My therapist said she could tell a difference, and my friends have been remarking on it, too.

Thus, I felt I had the courage (and ability) to help throw the shower. It was also at our place. I didn’t clean much beforehand as it’s already clean here, but it could have been better, yet I survived. My “have to clean everything perfectly” anxieties were thus lessened in that area. (Our front rooms are usually clean, my room is usually messy…a lot like growing up.)

So, while we were getting ready yesterday, my mind still halted occasionally but it wasn’t bad. I could tell I was headed towards bad anxiety just a couple of times, and after either eating or taking a break I was okay again. It was such a relief! One of the things that’s difficult to explain to people about anxiety disorders is that the “usual” methods of calming oneself don’t always work. We feel “stuck” in the anxiety with very little that helps lower it.

But….not this time. Some loud music someone played briefly on their phone almost got me while everyone was talking. I was leading the game so leaving for a break would have been awkward.

I fell right asleep last night. I did, unfortunately, have a lot of nightmares last night, but they could have been worse. I still felt like I had some control of the dreams. I ended up shaky with my “insides shaking” but I had no limbs flapping. For as much as I did yesterday, that’s quite a feat. Also, I couldn’t get out of bed today until after 1pm. Considering that at times after something so large I could have been wiped out for a few days, that’s also something. I’m fully hoping to get to go for a walk later. I could really use it.

Neither tremor nor tremolo!

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hymn-lgToday has been a good day. Last week I started getting more tired again and having racing thoughts and needing yet more time at home alone and more sleep etc. (it’s all relative….some versus more). But it was frustrating, as things will be. So at my doctor’s appointment on Tuesday, he upped my dose of Respirdall, and it seemed to help almost immediately. I still can’t go just anywhere I want to whenever I want to (it’s a l.o.n.g way from that), but the blessing was that it’s better again.

So I rested yesterday (Saturday) and last night, in the hopes of making church today. And I did! I woke up around 8:30am. And I was fine. No nightmares, hardly any racing thoughts. And it was a really good day.

Best part?

For years I have avoided, whenever possible, sharing a hymn book with someone at church and holding it with them (me with one hand, them with one of their hands, for those not familiar) because my hands shake and I’m pretty sure it’s more inconvenient for them to try to read it with my hand shaking, thus shaking the whole book. If my hand is shaking enough, I’ll just hand it to them. Anywhere in between and I feel awkward.

Today in Relief Society (women’s meeting) the woman next to me offered (as usual) to hold one side of the book, and….my hand wasn’t shaking! First time in years! Maybe this Respirdall is helping more than I realized. My hands were shaking this morning while I was doing dishes, but that they can “settle down” is giving me hope.

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.

The funky algorithms of PTSD

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Euclidean_algorithm_running_time_X_Y(Speaking of which, I can’t be the first person to wonder why “algorithms” isn’t spelled “algorhythms.” It would be more inviting to us non-math people; as if it could be cured through spelling. Some day I’ll understand them better, though. I’m determined.)

So I went to the fireside. If you’re not LDS, it’s what we call “go listen to a speaker on Sunday and get to see friends.”  And be uplifted. And I was. It was very good. Comedian/entertainer Jason Hewlett was the speaker. I’ve never been to a fireside that was anything like it. My heart was uplifted, my funny bone jiggled, and the depression/loneliness cloud that was over me this afternoon is gone. I’m still a bit shaky inside (the large crowd made me nervous when my anxiety was high, but I was okay) but my anxiety is way down for now.

So, should I have gone to the birthday party/bonfire last night, knowing I might miss church? It’s that whole hindsight thing. Since I ended up missing anyway. Is there any point in even worrying about it? I think that the next time I have to have too much alone time and I have the opportunity to go do something, maybe I should do it anyway. Or should I?

If math could predict this kind of thing, I would be trying to take more math classes. Or I’d just bug my son (or friends) for the answer. Would that life could be as “easy” as my son’s Multi Vector Calculus class.

More about Jason Hewlett, from Forbes.com

Counting Blessings after Nightmares

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I got over-tired again last night, but it was in a good way at least. I was playing Phase 10 with friends at church and watching others play volleyball. We were being pretty silly and it was a lot of fun. I also got to talk on the phone with my son who has just started his freshman year at college and it’s so much fun to live vicariously through him a little and to hear what he’s up to and that he’s enjoying himself and working hard. I got to hear from my daughter a couple nights ago. I’ll be bugging both of them again soon.

I had more nightmares last night, but they weren’t as bad as the night before. I took a long nap this afternoon and it was nightmare-free and very restful. I’m still a bit shaky, but hey, I can type.

List of blessings:

  1. My kids are doing well
  2. I have friends who know how to be silly and have fun
  3. I’m learning how to do the genealogy portion of family history a bit better and it’s fun
  4. Got to speak with my aunt (mom’s sister) on the phone last night about family stories (my mom passed away when I was 8)
  5. My disability hearing is coming up soon. This part is almost over.
  6. Our three week heat wave seems to be over. 100 degree weather is hard when you walk several miles a week to get places (doctor etc.)
  7. My roommates are great
  8. My kids are wonderful and doing well
  9. I found the second book online by Peter A. Levine that I want to read. I’m learning a lot from the one I already have. This is the second book, now on my wish list: trauma-through-a-childs-eyes-awakening-the-ordinary-miracle-of-healing_2481617

Saturdays and Sundays

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-My way of making it to church on Sunday the last few months has been by taking it easy on Saturday and Saturday night. If I do anything, it’s on Friday night, and still pretty mellow (small group of friends, games and that sort of thing.)

On doing something last Saturday night, I thought it might work. Mellow activity, started pretty early, all people I”m comfortable with, etc. By the end of the night I thought, “Hey, I’m fine! Yay!” And I probably was, mostly. Difficulty level of trying to wake up on Sunday morning was probably about a 6 or 7. The alarm didn’t help at all, and I had the “inside shaking” that didn’t seem like it would go away. Had I set three alarms in three different parts of my room (I do have three, it’s true) I may have been able to wake up and better assess the situation. I will need to reuse this tactic the next tine, but I hadn’t thought of it last night. Because….I thought I was fine.

Some unofficial ways (if I manage to wake up) I decide if I’ll be okay at church:

  1. able to speak without stuttering too much?
  2. able to speak at all?
  3. able to leave my room without running into a wall or door? (you have to have a sense of humor with this, or it just not fun.)
  4. the unknowable: when I get to church, how much noise can I take? Will I feel comfortable sitting out in the hall if I need to, and the inevitable question if I’m okay (please don’t make me answer or especially try to explain…)

So, basically, for this situation in the future, it seems like the “3 alarms” and possibly a friend calling me multiple times in the morning just might do it and get me there. Then, I could analyze the situation from there. Lots of fun. Honestly, I’m not sure how many people notice how I’m doing when I’m not doing well. The most embarrassing part for me is if I’m having trouble talking and feeling overwhelmed, and someone (or someones) seems to think that if they pester me with questions it will help pull me out of the fog, rather than what it usually does, which is pushed me farther into the fog. But at least they mean well….usually, and by that point I can tell them “wait,” walk away somewhere private and get them to leave me alone so that I can regroup. pig

I think it’s having the bravery to keep trying, no matter what I come up against when it comes to misunderstandings, that will truly help me move forward through this. People can sometimes say some pretty stupid things, but you know what? They don’t know what they’re talking about because they haven’t been there, or they’ve had a family member with a different situation and they’re trying to place that situation over mine in order to judge. Mental illnesses come in many varieties, people.

And next Saturday night I will set my clock radio, my cell phone, and my pig-shaped alarm clock that my kids so lovingly picked out for me. When I miss church, I feel like I miss a lot that would otherwise have helped get me through the week. Not that I don’t otherwise have ways to study the Gospel, but the ability to share and help others and learn from others? Not much like it in the world. I need it for my pride, my courage, humility, getting to know others and getting out of my comfort zone. Plus, I’m pretty sure that my kids worry when I haven’t made it to church, because they know what it means to me.

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