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.

Thursday, November 16, 2017

The Once And Future Vegan

I have been vegan off and on for about 25 years. Originally it was for ethical reasons. Then my body started to reject complex proteins and I started getting sick after eating meat. Dairy disappeared from my diet after the first go-around because I lost my tolerance for lactose. Then I started having trouble with beef, then pork, then turkey, and so on. I found out I was also gluten intolerant and probably had been for years. My allergist thinks that it may been damage caused to my GI tract by the gluten intolerance that caused the progressive intolerance to other proteins. My system couldn't digest the proteins and it allowed those huge molecules to break through the intestine wall and cause an autoimmune response.

For years I was stuck with a vegan, gluten-free, nut-free diet. It was healthy, that's for sure. I cooked 99% of my own meals because I could never trust that a restaurant wouldn't have something not listed in the ingredients. I did find a few canned soups and frozen dinners that I could eat, but they get old really quick when there are only 5 of them for you to cycle through. Even high-protein plant sources like quinoa and legumes left me feeling yucky if I ate too much at once.

Earlier this year, I started seeing a new allergist and he got me on some medication that targets the immune system directly. I started feeling better after binge eating hummus or other heavy plant proteins so I tried eating some fish. I actually didn't feel sick after eating it, although it tasted weird after not having any for so long. I found that my taste for cooked fish was almost non-existent, but I loved the sushi with salmon and tuna. Eventually I got up the courage to try the one thing that had been my Achilles heel in the past: Buffalo wings. I found a good place that does them right and they tasted divine. And I didn't get sick. My body dealt with it fine. I started eating wings a couple times a month - it was my guilty pleasure - and I was fine until I tried a new barbecue sauce that had wheat in it. Yeah, that gluten is still a problem. I was sick for about a week.

I eventually tried eating chicken in general, and even some turkey, and it sat fine. I even tried eggs and they didn't make me sick at all. Progress! I was able to go out to eat with my parents and eat "real" food. I started cooking some, although it had to be pre-cooked or handled frozen. I couldn't even look at the raw stuff without getting woozy. That should have been my cue that not all was OK

Well, eating any meat came to a screeching halt this past week. My parents are going out of town to my sister's place for Thanksgiving and I am staying home (yeah, I still can't not panic over traveling). I thought maybe I could find a pre-cooked turkey breast or something similar that I could have at home. I made the horrible decision to go browsing through the meat department. Now, keep in mind that not 3 years ago I couldn't walk past it without "seeing" blood running out of the bottom of the meat cases. It is a section of the store I walk past quickly with eyes averted.

Yeah, it was a disaster. It started with the hams and pork loins. Then there were beef briskets and steaks. There were big ham bones and half chickens laying there raw, some so fresh they still had some feathers in the skin around the neck. Well, I wasn't seeing a ham, I was seeing a pig. I was seeing a cow, I was seeing one of those cute chickens my friends keep. I might have made it out of there just feeling nauseated, but then the pigs started screaming. It was that horrible sound you hear at a farm when someone is forcing the pig to go or do something it doesn't want to and it is terrified. The cows were panting, like they do when they are put in a chute and they can't get loose. The smell of the place went from the already awful smell of raw meat to the coppery scent of a lot of blood.

I had hysterics. I panicked right there in grocery store. I got me and the cart partway down one of the frozen aisles so at least I couldn't see the meat department any more, but that was as far as I got. I couldn't breath without smelling blood and I could still hear the screaming. I know I ended up on my knees holding onto the cart for dear life and I just tried not to sob.

The good news is that I have been going to that grocery store for about 17 years and they know me. They have helped me in the past when I have had sensory overload and had to just leave my cart and go. One of the ladies in the bakery could see down the aisle and saw that there was a problem and she called one of the managers. Her name is Louise and I think she's been there as long as I have been going there. She helped me stand up and had one of the other staff members put my cart in the back freezer so my groceries wouldn't melt. She helped me to the front of the store to one of the benches and just sat with me until I got calmed down. The pharmacy staff could see me on the bench and they know me really well. One of the techs came over to see if I needed anything. I told her I had some emergency anxiety meds in my purse but that my hands were shaking too much to get it out. She got me some water and helped my with my meds, then went back behind the counter. (When I went in a few days later to pick up some prescriptions, they all had to make sure I was OK.) I had already gotten everything I really needed, so when I was calm enough to walk and think, Louise had someone go get my cart so I could check out. She insisted that I have one of the baggers go out and help me get my groceries in the car.

I am still shaking from it. I had some chicken breasts I had cooked the night before so I would have some on hand for meals. I couldn't even look at them. I told my parents to eat them. Last night I tried eating some chicken sausage with my pasta, thinking that if it didn't look like chicken I would be OK. I ate it fine, but when I was trying to sleep I had a sudden panic attack about how horrible a person I was that I had eaten that chicken.

So ... I guess we're back to being vegan. I might be able to handle fish. Maybe. I don't think I'm going to push it right now. And Thanksgiving dinner will be a grilled Portabello mushroom. No turkeys need apply.

Tuesday, October 10, 2017

No More Promises

Yeah. Remember when I said I would be doing a bunch of posts for Suicide Awareness Month? That totally didn't happen. I triggered myself. Brain fried. Writing didn't happen.

Well, now it is October and there was still a bunch of stuff I was going to write about. But I'm not making promises any more. They just stress me out. I lived so much of my life writing under a deadline that I think I have at least some degree of PTSD when I sit down and know I HAVE to have this thing written by a certain date. I just can't do it. At least not yet.

So, this won't  be anything deep or insightful, but a general update.

I am doing OK. I think. It is really hard to tell, to be honest. I have in general had more energy since the CellCept really kicked in. But I don't know what to do with it. I have had days when I really run with it and I end up really overdoing it. And it has messed up any sort of schedule or routine that I had, which stresses me out. I mean, if I usually don't get up until 11:30 or 12:00, what do I do with myself if I wake up at 9:00? I have more energy, but not that much. It's not like I can spend the extra time cleaning the garage or pulling weeds.

And although I have more energy, I seem to be more brain dead. I find myself messing up simple tasks like making coffee and I am getting a LOT of exercise wandering around the house trying to remember what I was doing. I just honestly don't know what to do with myself.

And to make matters worse, I have had a LOT of alone time. My mom had ankle replacement surgery and has been in a rehab center for the past 4 weeks. I don't do well with a lot of alone time; my brain likes to run away with itself. I don't know how many panic attacks I'm narrowly avoided. And my poor dad comes home from work and I start talking non-stop because I have been alone all day.

And now I am panicking because my mom comes home tomorrow and now I won't be alone and I don't know how mobile she'll be and she has been alone a lot, too, and will want to talk and talk and talk and I don't know if I can do that with my brain being mush.

I need my routine back. It makes me feel safe. But I also like feeling better. I feel more productive and like I'm getting better. But I don't trust it - experience has taught me that I always end up crashing again. I keep trying to establish a new routine, but my energy levels are varying too much from day to day. For instance, yesterday and today have been awful because a cold front went through and my arthritis is flaring up bad. I also had doctors' appointments both days so my stress is up. Everything just keeps fluctuating all over and it's freaking me out.

So ... status report. Doing better. I think. Too much time alone. Freaking out over not having enough time alone. Routine screwed to hell. My hands hurt. I'm tired. I want to clean my room all in one day. THE ROLLER COASTER IS GOING ALL OVER THE DAMN PLACE.

Yeah, that's about it.