Can I Get Off The Roller Coaster Please?

So it has been a while since I've posted anything. Basically, I have been either too stressed and anxious to write or doing so well I don't feel like I need to write. I can't seem to get off the damned roller coaster.

The good: It looks like we finally have a mix of medications and dosages that keeps me pretty even. I have had quite a few good days and I even broke out the easel and paints. I have been writing rough drafts of some essays that I a hoping to be able to put together as a book. I was cruising along pretty well, until ...

The bad: The blood work that my immunologist has me doing regularly has been showing increasing liver levels. They finally got above the "regular" levels and keep climbing. Several of my medications are metabolized primarily by the liver, so this could be cause for concern. He ordered an ultrasound of my liver and it didn't show any masses or cirrhosis, but there are fatty deposits throughout the organ. This diminishes the liver's normal function. So, I can now add Non-Alcoholic Fatty Liver Disease to my list. I did the round of doctor visits - and that really added to my stress - and we can't find any medications we can decrease or get rid of. As I mentioned under "good", we just got me functioning. So basically I just have to continue on and hope it doesn't get too bad too fast.

So, we wait and keep checking the levels. There is nothing that can reverse it. If I went off all my meds we could slow the progression, but that would be VERY BAD.

An added stressor has been my current therapist. Yes, that is a problem. You know it's not a good fit when you have anxiety attacks before the visit and don't feel much better after the fact. The therapist I have been seeing is my mom's therapist. Basically, we were trying the idea that any therapist was better than none. It was, to some extent, but it definitely wasn't ideal. His office was always messy - he would always have some sort of juice or smoothie combo on the coffee table and he would spend the first 10 to 15 minutes of the session getting things out of his mini fridge and mixing things in his mug and the stuff would overflow and he wouldn't clean it up and it triggered my OCD big time. And he would be late every single time. Not the kind of late where he was with another patient and they ran over. It was the kind of late where he was somewhere that was not the office and would finally come wandering in through the front door at 5 to 10 after. Oh, and he had a big painting of the St. George LDS Temple on his office wall and a small painting of Jesus on his desk. He told me he had  no problem with me saying bad things about the LDS Church, but it made me uncomfortable. Not to mention, I believe that having something blatantly religious in a therapy office to be unprofessional. I can see how my LDS mother finds it comforting, but it rubbed me the wrong way.

After having another uncomfortable session with him, I actually posted on my Facebook that I was looking for a new therapist. A good friend of mine with whom I used to work gave me an excellent reference. I had an intake session with him and he is much better. He pays attention. His desk is a bit cluttered but the rest of the office is neat. His decorating is in the Japanese style, which I find beautiful and soothing. Fingers crossed that he works out.

Even with the good visit with the new therapist, I am still just on edge. I had too many doctor appointments. I had my annual gynecologic checkup, my annual eye exam, and my 6-month dental cleaning in the middle of all of this. The co-pays have left me completely broke and I am overwhelmed to the point where I have been hiding in my room for most of the day binge watching shows on my computer. I just can't even handle talking to my parents

And now, with my stress levels already elevated, we head into the holiday season. I'm sure I've mentioned in past years that I detest the holiday season. Everyone pretends to be all cheerful and giving, but really they are buying things they can't afford and push themselves to the breaking point to make everything perfect. Christmas seems to be the time of year that Christians act the least Christian. And don't even get me started on the rampant consumerism that isn't in the spirit of any of the Holy days that fall this time of year.

This ends that rant. I hope my roller coaster slows down a bit.

Crawling

Even as I am writing this, I am listening to Linkin Park's "Crawling". It is so appropriate to how I feel right now.

I recently increased the dosage on my anti-depressant and I have been doing better. I felt well enough to attend 4 - yes FOUR - events for Pride Week. It left me exhausted both physically and mentally, but I wouldn't have missed a moment.

But that exhaustion caused some major problems. I had a couple of night where by the time I got to bed I was definitely hearing the voices louder and louder. I was able to sleep it off with a couple of days that included naps - I haven't had to do that for a while - and it subsided. Well, I thought I was recovered enough to go out this past Sunday. I spent some time at Affogato, my favorite coffee and good company spot, and took myself out to lunch.

Somewhere in there I got panicked and had to take extra meds to calm down. And then all hell broke loose. Somehow I messed up with my meds, and majorly. I didn't take the right meds at bedtime and I ended up without my anti-psychotic meds and some of my pain meds. I didn't sleep and I hurt like mad. I was totally miserable I finally took what I thought were extra pain meds at about 3 a.m., but I still couldn't sleep.

I realized my mistake when I went to get my breakfast-time meds. Everything was a mess. I ended up just dumping out 2 day's worth of meds and doing them over. I crossed my fingers and hoped we didn't end up with an overdose or a psychotic episode. The whole day was a blur. Nothing looked or felt real. I was shaking so bad that I kept dropping things. It was a horrible flashback to what it was like before my meds.

That night I took the correct meds and I slept like the dead. I felt better yesterday, but I was still shaky and distracted. I made the decision that I couldn't drive (the only reason my psychiatrist lets me keep my license is because he trusts me to know when I can drive and when I can't) and I had my dad drive me to run errands. I was really freaked out when I went to the lab for my semi-monthly blood draw and I didn't feel the needle, even though the phlebotomist had to hunt for my rolling vein. When I got home I ended up digging at my skin until I was bleeding and finally feeling pain.

This morning I am feeling a bit closer to "normal" but I have had what I call a reality shift. Basically everything has a different base color, like blue instead of yellow, and everything feels just a bit off. It's really hard to explain. I have had these before and nothing ever goes back. I just get used to it.

I am now paranoid about my meds again. And I was doing so well. I felt like I was actually walking through life again. Now I am back to crawling. 

Ups & Downs

So, I haven't posted much lately, mainly because I don't know how I feel from one moment to the next. I'll guess I'll just have to sum things up.

Physical therapy was going well, but then I started to overload on the social, interacting with humans thing. I sat down with my case worker and we figured out a way to set me up at home with a few fairly simple tools I could buy at Target. Also, the Sitting Tai Chi (Tai Chi for the really messed up) has been really helping with the range of motion in my shoulders. I am not hitting every day - if I have to run errands or have appointments it tends to wear me out - but I have been trying to do PT one day, Tai Chi the next, and back and forth. My energy levels have been better and I am able to do more without stressing out.

On the other end of things, my anxiety has been off the charts. My mother had foot surgery on May 31 (yes, another one. By the time she's done she'll have rebuilt both legs from the ground up) and no matter how much I tried, I couldn't stop myself from freaking out. It didn't help that she was in a massive manic state leading up to the surgery; we tend to feed off each other. I yanked out all my eyelashes and gouged some lovely new holes in my skin. And somehow I gained 15 pounds, so I am back over 200. The extra weight is killing my ankles and knees and making me just frantic to find out what caused the gain.

My anxiety has gone down a bit since the surgery. Because my mom can't put any weight on her foot for a few weeks, they have her in a rehab center. She is doing well and for now, at least, the silence in the house if calming me down. My eyelashes are growing back in (ouch!) and I am trying really hard to let the skin gouges heal. I have put band-aids on the ones I can so I can't pick at them, but some of them - of course - are on my chin where I can't wear a band-aid. They just don't stick because the skin is always moving. [Sigh]

So: good things and bad things. The roller coaster continues.

All Sorts of Therapy

Two months ago I had a horrible mental crash. I was having severe pain in my upper back and the doctors diagnosed me with scoliosis - yet another chronic condition that causes me daily pain. I was absolutely crushed and desolate and it put me closer to suicide than I have been in quite a while.

The diagnosis meant adding yet another doctor to the list, this one a pain specialist. I was REALLY reluctant to see him because some pain specialists are basically legal opioid dealers. I did not want to add to my medication list and opioids are out of the question because they make me hallucinate.

I was lucky and the pain specialist I saw was a good one. He did give me a new medication - a muscle relaxant - to use as needed if the pain got really bad but he cautioned me not to use it all the time. And the first thing he had me start with was physical therapy.

The physical therapy is probably the best thing to happen to me in more than a decade. The first few visits were bad. I even ended up canceling one appointment because I was overloaded. I was out of the house more in 2 weeks that I had been in the previous 2 months - and that is not an exaggeration. But the place is open and not crowded and all of the staff are absolutely amazing. At one visit I started to panic and one of the therapists took me aside, got me some water, and just sat with me until I calmed down. If I am having a bad day pain-wise, they are willing and able to adjust my therapy so I don't overdo it.

Six weeks later I am doing much better. I am still in pain - my arthritis is killing me today because a storm system is moving in - but I have a lot more energy. And it is helping me mentally because I am actually doing something. I am able to fight and act and DO SOMETHING to help myself feel better.

On the mental health front, my mom finally took matters into her own hands and set up an appointment for me with her therapist. My search for a new therapist stalled out and I haven't known what to do and where to try. She said that he might not be a good fit for me, but he might be able to point me in the right direction. I had convinced myself that I didn't need a therapist any more, but in reality I was just scared to go through the whole search thing. I have had so many bad therapists in my life and Shannon was so wonderful, I believed that I was better off without one. But I really do need someone to talk things out with, so the search begins again. .

I have my follow-up with the pain specialist this Wednesday and we'll see where we stand. Right now it is time to put on my shoes and head out to physical therapy. Catch you on the flip side.

Tired Of Being Alone In A Crowd

Every year I set aside the money and the time to attend one or two fundraiser dinners/galas. Every year, I spend days before the events stressing out and days afterword depressed and borderline suicidal. Well, I don't think I can do it any more.

The problem is that I am always alone, even if a know a couple dozen people there. I buy my ticket alone. I am assigned a table with strangers. I arrive alone. I wander the auction tables alone. I eat what little I can at a table full of conversation that I cannot follow. Nothing is more lonely that being alone in a crowd.

I always try to be part of a group. I will ask friends ahead of time if they are going and get excited when they say yes. This time, I tell myself, it will be different. I will be with people, not just wandering in a crowd. But it never works out that way. Yes, my friends are there, but they are too busy for me. I will get a hug and a "Oh, I am so glad to see you. You look wonderful. blah, blah, blah ... " And then they turn away to talk to someone else and I am left in that awkward empty space between conversation groups. I always hope I will be drawn into one, but my attempts to wedge my way into the topic just falls flat.

And so I sit by myself and sip lemonade, then wander through the auctions, then try to start a conversation with someone else only to find out that they don't remember who I am, then I sit at the table for a while longer, then there is the awkward dinner where I can only eat the broccoli and don't know anyone else at the table, then there is the entertainment and that point in the evening where everyone at my table breaks off into groups and I am sitting there again sipping lemonade and wondering why I am sitting there wearing makeup.

I was planning to go to the annual Equality Utah event this May. I go every year and it is a great group of people and a great cause. I was just sitting here trying to figure out how I am going to afford the $100 for the ticket and I couldn't help but think of last year's event. Last year there were people who were bending over backward to get me there. They saved a handicap parking space for me and told me which buffet lines had the vegan food. I even shared a dinner table with a man I have known for years. Only he didn't remember who I was - I guess he was more memorable to me that I was to him, which made it terribly awkward. I ended up picking at the food while he and his husband chatted with the other couple.

By the end of it all - the same old lonely thing that always happens - I barely made it to my car before I started sobbing.

The worst part is that I don't know why I always end up alone. Yes, I think differently that most people. I can't help it; my brain works different. But people always say they are my friends and that they enjoy having me at the dinner or lunch or party. But something always goes wrong. All I can think is that the world is too busy to pay any attention to me and I don't know enough about how "normal" people act to fit in.

I'm tired of it. I am tired of invitations that don't pan out. I am tired of parties that fall flat. I am tired of being alone in the middle of a crowd of friends. I am exhausted from trying to be social with people who don't reciprocated.

I think I'll just make a donation and stay home.

Cannot Catch A Break

In my last entry I mentioned that I was on the edge of a breakdown. Well, it turns out I was in the middle of one. There is nothing like a high-functioning psychotic episode to make life "interesting". I am glad I didn't have to go into  the hospital, but the recovery has been rough. We ended up doubling my anti-psychotic temporarily, then made it permanent. And I have had a lot of trouble giving myself time to recover.

According to my psychiatrist and several studies I have read, any type of psychotic episode damages connections in the brain. When you are young, the brain can rewrite new pathways relatively easily. But by the time you're my age, nothing heals fast. And the disconnect while the healing is going on is rather disturbing. When I have been in the hospital, I can always tell myself it really was that bad and I need to give my brain enough time to rewrite those damaged pathways. But I was home the whole time with no on-hand medical support. I lost days to memory loss and dissociation while I was trying to heal. I am just now getting some "normal" function back, but it is different. Every time I have any kind of psychosis, colors change. Sounds change. Textures change. It's like waking up and some sort of filter has been put over my senses that makes everything softer, or harder, or just different.

So, I'm finally coming out of it. Everything seems more blue - even sound, which is hard to describe - but I am connecting and functioning better. Which, of course, means that something else has to go to hell. I have had intermittent problems with my upper back for years, but I always thought it was part of the nerve pain in my shoulders. Well, about a week ago we had a really nasty storm move through and my arthritis flared up bad. I'm pretty sure they could smell the arthritis cream I was using on the other edge of town. But even worse, my back felt like I had pinched a nerve or dislocated something.

I couldn't get an appointment with my primary physician because he was out of town. The pain was so bad I went to Instacare instead. It was a horrendous experience: A Monday morning in the middle of flu season. I was there 4 hours and was wearing a face mask the whole time to hopefully ward off all the nasty germs people were coughing and sneezing into the atmosphere. That was a week ago and my chin and cheeks are still raw from the mask rubbing - and I still caught a nasty chest cold.

I finally got in with a doctor and he immediately sent me over for x-rays. When they came back, he told me that the problem was osteoarthritis in my spine. He actually said that he had never seen arthritis that severe in someone as young as me. Yay! I'm an overachiever! He showed me the pictures and even I could tell it was bad. There were bone spurs and rough spots all over the place. And he told me something I have probably read before but managed to forget: That osteoarthritis is not area specific. Yes, it is more likely to form in joints that have experienced trauma, but once the body starts producing the extra bone deposits, it can occur anywhere in the body.

This past week I have basically been in shock. The Instacare doctor gave me prednisone and a muscle relaxant to bring down the inflammation in my shoulders and back, with helped at least temporarily. And he directed me to some OTC pain patches that I can put right on the bad spot. But I have just been floating. I left a message for my primary physician and left him a message, but other than that I just haven't been able to cope. It is bad enough I have to deal with errant messages in my brain, but body-wide arthritis? Bone spurs rubbing on my already overactive nerves? WTF!?

My doctor's MA called this morning and told me they were sending a referral to a pain specialist, the same one my mom sees. I hope something good happens because I feel like I've had the wind knocked out of me. (Or maybe that's just the chest cold). I don't want to deal with yet another new doctor. I don't want to go into a new place and try to explain my many issues, mental and physical. I am panicking and I don't even have an appointment yet.

I am trying to hang on. I have fallen on my face again and I am just too exhausted to get up again. Not right now.

Frog In A Pot

I am on the edge of a breakdown. I am actually surprised to say that because it crept up on me. I have been like a frog in a pot of water on the stove. It started off cool, or at least pleasantly warm. But the stress has been building, I haven't had time to cool off between stressful situations, and it just keeps building. I am just a few degrees from being frog soup.

It started in September when my mom had her ankle replaced. Then the holidays hit. Then my dad injured himself and had to have hernia surgery. Then my mom had her knee replaced. Then my dad was surprised with a week of work interviewing new employees this week, just days after my mom came home from her surgery. My mom had a doctor's appointment she couldn't put off so I had to take her today. Oh, and my cat Bubbaloo had one of his teeth break off so we had to figure out how to get him to and from the vet with my dad's interview schedule. And we have had all the home health people traipsing through the house and I just want them all to go away.

I am in very hot water. It's not quite boiling, but it's getting close.

On Sunday, the day my mom came home from the hospital, I realized that the voices were getting loud. These aren't the normal ones that are always there, but are the ones that sound almost like I'm overhearing conversations from all around me. By this morning I was literally shaking and tried to see if my mom couldn't change her appointment or get another driver, but she had to get into the doc and it was too short notice to find anyone else. That the Goddess that my dad got home in time to pick up Bubbaloo from vet. I was on the edge of falling to the floor and sobbing if I had to do one more thing.

Fortunately the rest of the week is free. Well, my dad has to work tomorrow and Thursday and my mom will have all sorts of home health people in and out. Since her mobility is limited, that means I am the greeter. Just the thought of the doorbell ringing makes me jumpy right now, let alone actually needing to answer the door and at least saying hello.

I need things to calm down. I keep getting manic and frantically cleaning the kitchen or the living room. I spent 40 minutes trying to straighten all the framed needlework my mom has on the kitchen wall and I spent more than an hour meticulously decorating my dad's birthday cake. I am exhausted, but if I sit still I start to shake.

I need to get out of the pot, and soon. Or at least get the heat turned down. I need calm. I need the stress to go away. I just can't let myself break again. I'm still trying to mend the last fracture, and if I break again I don't know how to put it together again.

Please let the heat go away.