Monday, April 30, 2018

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.

Saturday, April 7, 2018

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.

Monday, March 5, 2018

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.

Tuesday, January 23, 2018

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.

Friday, December 29, 2017

Happy Holidays - or not

I haven't been posting here or on my Facebook page. I am just so anxious and frankly pissed off that I have been afraid to voice my real feelings. Yes, I am still fighting that ingrained feeling that you don't complain or tell someone you are angry and why. I am trained to always keep the peace, be the calming one. Well, that hasn't been the case and so I have just kept silent.

To start with, the Russian roulette of immunosuppresent continues. I started yet another one - this is number 5 - at the beginning of this month. So far - knock on wood - it is doing what it is supposed to do. But then, so did 3 others at the 4-week point. So I am on edge just waiting for it to do something horrible.

Then there are the holidays. I planned ahead and had everything either in my hands or sent to the person by the first of December. The plan was that then I could just relax and not stress gifts. Well, I didn't take into account my mother and her holiday mania. She flip-flopped all over the place on what she would get the grandkids. Then, when she had that settled, she didn't let it go. She had to do more. It wasn't quite right. They needed to do something else. She hit that manic stage that I was trying so hard to avoid.

Then she started the baking. The original plan was one day of making one kind of cookie and being done in one day. Well, she ended up with 5 days of baking instead. The house smelled heavenly and I couldn't eat one single bit of it. She was on her feet so much, she had to get her walker out again because her knees hurt so much. But she wouldn't stop. I started to get manic and OCD myself, but I couldn't do anything about it. The kitchen would be a mess, there would be flour all over the counter where I was trying to make dinner, and the faucet handle and cupboard knobs were sticky. I NEEDED to clean the kitchen, but I couldn't. And still there were all the wonderful things I couldn't eat that were being packaged and sent to everyone else.

Now, normally I don't stress too much over people eating things I can't. My diet is so restricted, I just can't realistically expect everyone else to bow to it. But things were getting too fucking out of control. Even Christmas dinner was devastating. My parents had their traditional ham, which is fine if I don't need to eat it or touch it. I had a broiled portabello, which was delicious. But as I was fixing my own separate dinner, I told them I was almost done. They both looked at me surprised. My mom actually asked if I was going to eat with them. My answer was "of course", but the fact that they were sitting down to Christmas dinner and weren't expecting me to join them was heartbreaking.

Yesterday my sister Kristin came down with her kids and her live-in Ryan. There was pizza and birthday cake for my niece Kassie. No one asked if they could pick us some of my gluten-free donuts or coconut milk ice cream so I could join in. And right now the house still smells of baking thanks to the omelet pancakes my mom made everyone else for breakfast. There are platters and plates of peanut brittle and fudge and other goodies all over the kitchen counter - none of it I can eat. At this point I seriously am just pissed off. It reaches a point where it feels to me like no one thinks I'm worth any effort. There are 2 cookbooks in the cupboard full of recipes that are gluten-free and vegan. With all of the baking going on, would it hurt my mom to at least open one up and see what is there?

I have been bombarded with a billion little words and actions that make me feel isolated. My no-stress holiday season is instead a minefield of hurts, imagined or otherwise. I am not sure whether to break something or just curl up and sob. I feel like I'm being a whiny child, but I really just want to be included without feeling like a burden. And that just doesn't happen.