So many possible (good) changes

There really are so many possible good changes coming up for me: the possibility of finishing my B.A. via independent study (waiting on my acceptance letter), the possibility of getting out of this rut I’ve been in since my awful Risperdall/Fanapt med change by upping the Fanapt. I’m on a really low dose of Fanapt, so it’s a good possibility for change. I was so nervous from the shock of the med change itself (the six weeks after) the last time I saw my psychiatrist that I wasn’t ready emotionally to try anything else.

I may not be getting my Utah geography correctly, but I think this photo is of the light coming down in a slot canyon (?) in Utah. In any case, I know the places even if I don’t know the terminology, and the simple terminology for it is beauty: with God’s creations and his light shining down. Some days I may be (theoretically) down in one of these slot canyons and even though it’s beautiful, I feel so stuck and alone, until I find a way out; often with help. I feel like I’m getting there. I feel like, even though it’s been hard the past couple months feeling like I have no “good days” physically and I’m only feeling “okay” on some evenings, at least I know there’s more to try and I do feel deep down in my bones and my gut or however you might say it that things are looking up.

I do need to get through some difficult things with my family first, but by a month from now that should all be taken care of. Now I just need to say a prayer that I find a way down to CA and have the money to see my kids during the time when it’s convenient for their summer schedule.

I am feeling  positive. This will work out. And I still need a lot of patience!

Weak and Tired

I’m still feeling weak. You could say I haven’t had any “good days” (physically) like I had before my med change. My therapist said today that it probably is anxiety that’s weighing me down. I tried to take a long walk yesterday and was fine for most of it, but towards the end I kept having the urge to just lean up against something and take a nap.

I’m still on a low dose of Fanapt, so I can ask my psychiatrist to up my medication to see if that helps.

PTSD and a day in May

My nightmares haven’t been as bad the past couple weeks: in fact I think I went a whole week without any. I still have intense dreams without the nightmares, but I can live with those.

I am feeling rather weak and I’m not sure why. My sleep schedule has been way off and I suspect that as the culprit. When I can’t sleep at night, I turn on General Conference (LDS Church) and listen to it. I haven’t had much exercise and perhaps that’s made me weaker.

I’m applying to finish my BYU Bachelor of General Studies degree (independent study) and I think that’s helped give me more empowered dreams. I’m really excited about it. In the past three years I’ve had trouble and writing and reading more serious subject books due to problems with focus and being “foggy-brained” but I think maybe I can do it now if I pace myself. When I was on campus, I had to go full time, and that was a no-go. I think writing two blogs has helped ameliorate my issues with perfectionism, so hopefully now I can just put my thoughts down on paper and get papers written. I’ve struggled for years with the fear that I’ll never be able to finish school and support myself.

I’ve also been a bit bored despite having projects to do, and my therapist sees that as a sign that I’m getting better. Now I just need more normal sleep and more exercise. It’s beautiful out there today: can’t wait to get out.

Spring

Despite having allergies, spring has always been my favorite season. It’s especially so here in Utah. I’ve been here almost five years, but all the new (to me) plants and trees and flowers haven’t lost their novelty. I love their connection as symbols of Easter and the resurrection as well.

Things are going along about as usual. Spring and spending time with others is making it easier to bear. I had really good dreams this morning as a nice change. In my dream I had some kind of job as someone’s assistant. We shared a big office and my desk and surrounding area had a lot of charm. I knew that somewhere nearby my daughter was at school and my son was away at college and all was well. The dream repeated a bit later and I was a graphic designer, which is way outside my range of talent, but it was a fun addition to the dream.

I’m going to cling to memories of the good dream and see them as a sign that I’m feeling hope in my future when it comes to my anxiety. In the meantime, I have more to work on with eating a bigger variety of foods, and two doctor’s appointments coming up where I get to talk about some unpleasant things I’ve been dealing with. Since I’m on Medicaid now, my insurance situation has changed, which I thought meant that I could get a doctor closer to where I am now. However, all the doctors here in Orem had wait lists several months long for Medicaid patients, so I’ll need to go to a different city. I found one near the local bus line, though, so I still think it will be easier.

There are a lot of things to be grateful for, and today I’m grateful that I am feeling the gratitude.

Recovering!

It’s been 5 or 6 weeks now since the medication change (Risperdal to Fanapt) and I’m finally feeling human. I think that after the withdrawals left, I must have been struggling with sleepiness associated with Fanapt. I’m still struggling to get my sleep schedule back to normal, but at least I’m only sleeping 8 to 10 hours a night instead of up to 18. I’m also still waking up partway through my sleep with awful shakiness that doesn’t always go away once I’m fully “rested.”

I feel like my mind may be more clear than when I was on Risperdal. I’m also not certain, but suspicious that my eyesight may have been affected by it the same way it was when on Geodon and one other med.

My nightmares are indeed “clearer,” and when I write them in my journal (like I’ve been doing for years) I feel like they make more sense to me than they did before. Cautious optimism here. 🙂

My decision today is, once again, whether after not sleeping last night if I want to try to stay awake all day or to give up and get some sleep. The staying awake method hasn’t been working well, with the big exception of when I need to go somewhere I can get there. I don’t have anywhere to go today and I can’t think of anything that will keep me awake. If I try to exercise I will probably trip over my own feet and hit my head on something. Challenge to be continued. I’ve been here many times before and I’ve always gotten through it.

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.

high anxiety

Just not doing well. The past week I’ve had high levels of anxiety about 18 hrs out of each day. I’ve managed to relax a few hours out of every other day or so. I’ve had a lot of paperwork to do for myself, my son, and my daughter (all for good things) and keeping track of it and what needs to be printed out, mailed, notarized, and faxed has been a challenge. I don’t own a printer or a fax, so it’s meant a lot of bus rides. A friend helped me out yesterday.

I was up most of last night with digestive pain, but now it’s all gone. 🙂 I played “Rock Band” with friends at activity night at the church on Tuesday: unless you had good observation skills, you wouldn’t have known that I was anxious. I had to leave once for a while because it got too noisy for me, but by the end of the night my anxiety level seemed like the lowest it’s been in a long time. We had an activity the night before, but that one didn’t go so well for me, and I had to leave early.

The good side to all of this is that I’ve been able to spend time calming myself as much as I can and trying to figure out and write down where it’s coming from. The odd part is that I can go to bed feeling so much more relaxed after being with friends or going for a walk, then partway through the night the nightmares and/or tremors begin, with my head shaking or my arms twitching; or in one case last week, I had bad nightmares I couldn’t wake myself from until about 10am when I woke up partway with my arms pinned to me, and I couldn’t move or completely wake up. This lasted until about 3pm.

So life goes on. Will getting a set date for my disability hearing, and getting it finally over with, help solve this? Is it showing me just how much fear I have inside me that I need to heal? I have no idea. I missed my doctor’s appointment on Tuesday because I could not speak or get up and my body was shaking. It’s been rescheduled. I’m working on getting a ride to my therapy appointment so there’s less chance of missing it. I am very blessed that there are so many people (even strangers, people from church who don’t know me) who are willing to help. I get to where I just want to prove that I can make it myself for a while, then I go through a bad spell again and have to humble myself and learn to accept help again. Do any of us ever really learn this lesson?

It makes me laugh that I can still type so well when I’m still having trouble speaking. I absolutely had to make a phone call for my son’s college plans for next year, and the lady at the other end was extremely kind and patient.

 

 

Live in the Precious Present

Positive Ponderings:

The downside of venting so much on this blog and trying to explain PTSD is that it’s all come out so serious and depressing. I don’t think that my overall view on life is depressing, in fact I get called an “optimist” and that “I smile all the time,” which makes me laugh, but makes me happy. Thank goodness.

I have learned so much from the past 20 years that I couldn’t have learned any other way:

• Learning to not care what people think, when it doesn’t matter most of the time
• Having courage to stand up for myself and others
• Learning to believe my gut feelings when I realize that I’ve found an answer, and that it doesn’t matter if everyone else believes me, just those who matter, and to not give up on finding answers
• That there are so many wonderful, beautiful things in life that I can see just about any day, no matter what is going on otherwise

I am a huge Pinterest lover. It’s something that’s easy to do, usually no matter how I’m feeling, and I’ve found so many cool ideas and inspiration there. I’m not a passive Pinner: it goes somewhere. (Thank you humanities skills) 🙂 It’s my present day version of the love I had for card catalogs in the library and going through my parents’ books while growing up, combined with the awesomeness that was encyclopedias. (Thank you World Book, 1980 edition).

I Pinned this to my “Inspiration” board today. It looks like it may have originated from artist Lisa Congdon, who has some pretty cool works of art (including iPhone covers) on her website. She loves color, and I love color (yay bright, fun colors) and I like her stuff. Win win. I would not trade my life for what I thought I wanted, with the exception of being around my kids more. Hopefully as I get better, that will happen. I still have visions of getting to watch my grandkids for my kids, if grandkids happen. (No pressure, kids. You’re too young right now anyway.) 😉

On a scale of 1 to 10…

I’ve discovered that there’s sometimes still a large disconnect between what some of the people who “know” me think I’m going through, and what I’m actually going through.

Have you ever been asked by a doctor how severe the pain is that you’re going through, on a scale of 1 to 10, or 1 to 100? I finally got the courage to ask one time, “So, what is 10? Is 10 going through labor? Because it’s bad, but it’s not that bad.”  I’m still not sure how to do that with friends, or when it’s even worth it. I have just a few friends that I will try to further explain it, because they’re the friends who have felt comfortable in the past asking for more details, and who seems to mostly “get it” even if they haven’t been through it. I learned the hard way, at a more needy time of my life, that even if I think someone who absolutely doesn’t get it and doesn’t seem to want to, even if they ask me questions, I probably won’t be able to ever talk or explain enough. They’re probably not emotionally ready, and I’ll just end up getting hurt, and maybe they will, too.

I still haven’t figured out the pain scale. Doctors seem to be able to figure out what they need to without me trying to gain clarity for myself.

As for my anxiety, thus far the “10” (and worst) for me was the time I had to go to the E.R. My doctor and therapist know what that means. I don’t think that many people have seen a panic attack that’s that bad, though.

So, a couple of people asked me what it was that keeps me from church sometimes. (I feel a little vulnerable on this one, for some reason, despite the irony of writing it on a blog where I’ve already revealed quite a bit.) Usually, it’s that my anxiety is so bad that my nightmares have kept me from sleeping very well and I can’t wake up. If I can wake up, it’s more tricky. I’m more likely to go to church, but nervous about how I’ll be able to handle it. Last week I managed, but I had to miss a lot because I had to sit outside of Sacrament Meeting and Relief Society because the noise and crowds were too much. This week, I managed to sit outside Sacrament Meeting okay, but by Relief Society, I just needed to lie down. Some people may think, “oh, just do some breathing techniques” or one of the many other things I’ve learned. Those things help me on a regular Sunday, or in the long run, but when my anxiety is hitting a 7 or 8 (nothing most people ever have to deal with, I don’t think) that’s not going to do it. As I said to a friend, “If you had the flu, and weren’t retaining anything you heard, and all you could think about was lying down so you could calm down and get some sleep, would you stay?” Also, I DON’T LIKE missing things. Yes, I do get embarrassed if I start to twitch or I feel stuck somewhere and my mind is about to turn off because I keep trying and trying to do calming techniques and it’s not working, because I’m “running faster than I have strength.” No one was ever promised that none of us would have to deal with a difficult mental illness in this life. I don’t want to make people have to see it. It makes people uncomfortable. On top of that (and probably more important) is that it will keep getting worse until I find a way to calm down, and sometimes the only way to do that is to be able to lie down in a quiet room, by myself, where I know no one will bother me. 

I had to ask a friend to take me home early on Sunday. It was quite a bit out of her way to drive several miles to drop me off, go back to church, then come home again this way. It was extremely kind of her. When I got home, I said, “I don’t want to be here, but I need the rest. But this means I’m missing church again.”

What did I learn from this that I need to work on? I took a long nap on Saturday afternoon, that ended up being full of nightmares and thus not restful at all. I ended up afraid to go to bed on Saturday. I need to try to go to bed earlier on Saturday nights, and learn not to be afraid. Plenty of techniques I can use with that.

I understand those who mean well who think one or two simple things, applied daily, will fix all this. It’s just not that simple. It’s more like a very long list of things that will possibly work, as I go through it and pray about it and talk with my doctor and my therapist etc., will fix this. Please don’t insult the intelligence or the integrity (even if we’re not perfect….I know I’m not) of those of us dealing with serious mental health issues. And obviously I don’t have it as bad as a lot of people: no hallucinating, no long stays (or even short ones) in the mental hospital. But getting over my PTSD is like having a full-time job: but one with odd hours and no sure answers. The answers are looking a lot better than they were 5,10,20 years ago, but one of the biggest battles is yet around the still elusive corner: (will I get approved for disability?)

Many, many blessings

My anxiety over the wait for my disability court date (which decides if I receive disability or not) has been wreaking havoc with my body and my mind, but it’s also given me an opportunity to dig deeper, have more hope, and see more blessings: not to mention come to terms with some emotions that have been buried pretty deep. This blog has been lots of serious, so today I list the positive. (My sense of humor still seems a little broken tonight, so that may not make it in. We’ll see.)

1. We had snow yesterday! Utah is in a drought, and my home state of CA has been in a drought: we had snow, Huntington Beach and Long Beach both had so much hail that people built little “snowmen” out of the hail. I love the snow. It make the cold more bearable. Watching it from my window was magical. Getting to go for a walk in lightly falling snow a few days before that was also very healing. I love walking, I love nature. It’s amazing. I also love that these days we can see what’s happening in other parts of the world with a click of the mouse: beach covered with hail! I didn’t have to miss it.
2. I had my first ever SimplyHealed™ session with the extremely talented Katie Buhler. She had a drawing for a free session, and another friend of mine won it, then said that she wanted to give it to me. So kind of her. I’m still trying to decide what kind of fun thing I want to do for this friend as a thank you. I did not know what to expect for the session. I’ve read about the Emotion Code, which is similar: and several people have recommended SimplyHealed™ to me. It was quite the experience, and difficult to describe. I’ll be doing more sessions with her for sure. *When* I get disability. I’m going to get it. I’m putting that “out to the universe.” I highly recommend Katie. Her sister in law, Holly Buhler, also does SimplyHealed™.
3. I have had an interesting life when it comes to trials (like everyone….). One thing I have been very blessed with throughout most of my life is kind, amazing friends. I had amazing friends in high school that I’m grateful that I can still hear from on Facebook. I’ve been able to reconnect with college friends since moving to Utah. Friends from when I was married and my ex was in grad school are also still easy to get a hold of and catch up with. Friends from my most recent ward (church congregation) are also easy to catch up with on Facebook. What did people do if they had to stay at home a lot before modern technology?  🙂  They say that Facebook makes people less happy with their lives, and I’ve caught myself feeling that way a few times, but mostly it’s been a good reminder to me of the people I’ve been blessed to interact with and that life isn’t always hard.
4. I’m grateful that I love to be around people. I can be sensitive to a lot of noise, but I usually love company. Once a week our single’s group has a volleyball/game night. I was playing a fun game last night with friends on the stage at church while volleyball was going on. The game was an app you can get on a smart phone, and you choose a category (animals, 70’s stuff, 80’s stuff, celebrities, movies…) and put it on your forehead similar to the game Hedbanz and have others describe it and see if you can guess it. Some of my favorite, most relaxed, easy to get along with friends were there playing: one of those “small things/huge blessings” that you want to catch in your memory and remember for the harder times. If I wasn’t willing to reach out and trust others, I wouldn’t have those small but significant blessings that come from good friends. I was also able to talk with a friend early yesterday evening over some things that were bothering me that I had a feeling she was uniquely qualified to be able to help me out with. We are all so different and have such unique abilities in the ways we are able to connect with and help heal each other.
5. My kids are my greatest blessings. My greatest trial has been to not be able to take care of them and be around them like I want to. Heavenly Father has made this turn out in ways that have been unexpectedly positive, but it’s certainly not what I ever would have wanted. But watching them learn and seeing them be okay while living with their dad and step mom has strengthened my faith that Heavenly Father loves us and wants us to be okay.
6. And what have I learned from having PTSD? A whole lot of patience in learning how to wait for answers, how to search for answers, how to ask help from others: seeing that scary things can happen and that people come out the other side, and that I’m far from alone. I’m still in this process and probably always will be. I imagine that someday, when I’ve processed this all a lot more, it will be easier to write about. I love that I’ve met so many people who have been through difficulties who are so different from mine, and yet we have a connection, even though it may have come through things we’d never want to go through again.