lab work and other stuff

Lab work and other stuff

I was having a difficult time sleeping last night due to pain. I fell asleep sometime after 1 when I decided to sleep on my left side, where I hurt, and use the body pillow as my head pillow rather than the standard one I had been using. I slept through the night until my blasted med alarm went off. I couldn’t believe I woke up in the same position I fell asleep in. Only thing was, next time I am putting a pillow between my legs because my right buttock was hurting something awful. Tennis ball massage calmed it down.

It was hot but not blazing when I left around 0930. A guy came over talking to himself and as I rounded the corner to the bus stop, he knocked on the brick apartment building to see if the bricks were real. I sat on the bench and he told me the new condo place had fake bricks. I said I know. I told him cement was expensive. He was like really? OMG why do weirdos talk to me??? He was telling me all about the town I lived in like I cared. I agreed with him. I swore at times as the f bombs are just part of my language and that seemed to offend him. He just stopped talking. Thankfully the bus came and he said nice talking to you. I was scared he would continue talking to me all the way to the Square!

I went to Starbucks and had my breakfast and espresso. I had five shots today because it was going to be a long day. I finished but didn’t have time to write so I grabbed my espresso cup and left. Now it was hotter. I got to the train station and waited for the train. I was feeling okay. I got off my stop and started walking toward the building to have my blood drawn. I got to the second parking garage when my ankle acted up. Fuck this wasn’t good. I stopped for a bit and then carried on carefully. I went to the blood lab where my PCP’s office was but because I had urine tests also, I had to go to the lab 3 floors down. Okay, they were better phlebotomists anyway. I went and had my blood drawn. I thought I could pee. I felt like I could pee, but I couldn’t. it wouldn’t come out despite nearly drinking a liter of water. UGH. I told them I couldn’t go and that I would be in the lobby until I could go. I figured in a half hour or so, my bladder would be full. I kept drinking water. For some reason, I was really thirsty. Finally decided to try again and after a few minutes which felt like hours, I went. Urine retention sucks so bad. I cannot go on command. I have to be almost overflowing to go. Damn nerve injury.

I had about 15 minutes before I had to see my psychiatrist. I walked over to the building. I checked in and there was a little girl about 2 in the waiting room. She was so cute. She kept walking around like she owned the place. I kept saying hi, but she was shy and would go to her grandmother to hide her face. It was funny how kids are like that. My doc came and we talked about my previous lab results. She had never heard of my medication lowering my sodium after being on it for so long. I had. There was a lady on Twitter whose sodium levels were dropping and no one figured out that it was the Trileptal until she was very sick. She was in the UK. I told her about the book, which I meant to show her but totally forgot to bring it with me. I will next time.

I didn’t want to make an appt with her. She gave me a time on the day I plan on ending it and I told her I couldn’t make it. When she asked why, I lied and said I had PT. I wasn’t in the mood to bring up my suicidal thoughts and just let it be. I was more worried about my lab results.

I had sent a message to my PCP that I had the lab work done today. Around 1730, he messaged me saying that my sodium was normal. I then got a message my test results were available for viewing. I am one point above normal. I will take it. I have been eating salty foods all week. I emailed my psychiatrist about the results and that I was in a flare. I had told her I could only take one breakthrough med a day which I hope to change next week. I had to take another pill a little while ago because as I was putting my dinner dishes in the sink, my ankle exploded in pain. It was too early for my night time dose so I took the breakthrough. I am still hurting and I am not in a good mood.

I went through Twitter like I always do. One of my pain community member had posted a pic saying that the biggest risk for chronic pain patients isn’t addiction. It is suicide. OMG is this so fucking true. I had to use the bathroom so went downstairs and as is the norm, my ankle had a fit. Totally went out on me. How can I not think of ending my life? I had just taken a breakthrough med an hour or so ago. And now my ankle is having stabbing pains, the “glob” is throbbing, and my malleolus is being hammered. I just want to not be in chronic pain and that is my life sentence. I don’t want to live anymore. It just has to end, and it will soon. I can’t continue like this. I thought I could. I thought things were getting better. But like always, it was a joke. A big HAHA, fooled ya. I still haven’t taken my night meds, which means I have to get up once more. I don’t have anything to do tomorrow except find my carryon bag so I can pack for my friend’s BBQ on the 4th. It is going to be hot and I want to dip in their pool. Little things is all I have to look forward to between now and the end.

How a grumpy day turned awesome!

How a grumpy day turned awesome (skip to end if you don’t want the boring parts)

I woke up grumpy. I kept waking up at odd hours, mostly because I was afraid I was going to sleep through my alarm. When the alarm finally went off, I was not wanted to get out of bed but my bladder forced me too. I used the bathroom before I took my meds. There was no waiting. I guess I had been holding it for some time and it wanted to be emptied now. After I went, I brushed my teeth. It was only after I had rinsed my mouth I realized I still had to take my meds. Fuck. That meant water and it was too early for that. It would make me puke. I took them with powerade anyway.

I then got a text message saying the bus I needed to take was 20 minutes behind. I got two of them so fuck leaving in 45 minutes. I had to leave now, going a different way. I got dressed quickly. I went downstairs and gave my mother the check for tomorrow so she could go to the bank. I told her I would be home sometime in the afternoon and she said today in a demanding tone so I said no tomorrow in a sarcastic tone and she yelled at me. Fuck you and I left (I didn’t say that or I wouldn’t be typing right now. I went to the bus stop. I checked the bus app to see when one would be coming and it said a few minutes. I didn’t feel like putting my headphones on. I wanted coffee badly. When I got to the station, where I planned on getting my caffeination, it was closed. Just lovely. I got my pass for the month and went to catch the train. The train came and I had to get one another one to get to my stop. That train was heading back to Boston. Fucking fuck. A switcharoo this early in the morning?? UGH. I got on the train to go one stop. Then this Chinese lady raced for the elevator and I waited for the next one. It was full of people so I waited for them to exit. A guy came on before I did and nearly closed the door on me. WTF. I hoped the bus I had to take to PT would be coming soon and it did.

I had a half hour before my appointment so I went to Dunks and had their coffee. It was decent. I also had a sandwich to try and get me out of the grumpy mood. My hip was hurting me and I forgot my breakthrough meds. This was just great. Around 1030, I walked to the PT office building and waited for my PT after I checked in. She got me and asked how I was and I told her my hip was really bothering it, you aren’t touching it today. And if you tried, I will yell at you. She said okay. I told her I did my exercises yesterday and she was happy. I did about three clamshell before my hip said no more. I told her I think I had the pillow too high. She said try a lower pillow so I will. We did the exercises she gave me to make sure I was doing them right. Then she said she was going to do myofacial release and I got scared. I said I will yell at you if you hurt me. She then showed me what she was going to do on my left arm. I then told her, that huh, that was probably not a good arm and showed her the bruise my doorway gave me. She asked how I got it and I said I was attacked by my doorway! She laughed. She showed me what she was going to do on my good arm and I said okay but be careful. I had stuff to do today and didn’t want to be in more pain by the end of the day than I want to be. As she was doing it, she kept creeping up to the area that hurt and I said watch it. She said ok. She did it for a few minutes and then it was over. I didn’t feel any different. My hip still hurt the same. She then asked about appt and I made two more.

I missed the half past buses and had to wait nearly a half hour to get back to the station. My hip was not happy as I had to stand. I was doing everything, walking around, standing on a wall, shifting my weight, all the while cursing myself for forgetting my pain meds. I was listening to my country music. Finally the bus came but the only seat available was the one facing the buildings where my father used to live. I closed my eyes so memories wouldn’t come flooding back. I had to wait for the train. The time thing was wrong. I waited more than 1 minute for the train, maybe 5-8. I was standing so my hip was thrilled as well. I got on the train and took a grumpy selfie. I was so pissed. I still had to connect to another train line to get to my therapist’s office. I got to the connection and followed the sign to where I thought said Alewife. It turned out to be the other end. I was pissed. I went back upstairs and asked the train employee where to connect to the Alewife side of the red line. She showed me. More stairs. Fun!!! I wanted nothing more than 4 shots espresso at this point. I was very tempted to leave this train and walk to another station but knew that would kill me.

I got to the stop and the Starbucks was closed due to renovations. Just made my day that much greater!!! I went to a coffee shop I used to like and got an iced coffee that tasted like shit. It costed me nearly $5 so I drank it, but only about half of it. I didn’t want to get sick. I wrote in my journal about my day so far and what I hoped to talk to my therapist about. When it got close to appointment time, I used the bathroom and then packed up my stuff to go.

Therapy went okay. We talked about my mother being a bitch the past few days. He asked if I could move out and I said not unless rent suddenly became wicked cheap. He was curious to know where I lived so pulled up my address and Google had my house. Haha so weird. He said I was in the middle of nowhere. I said there were two bus lines I was near and one went to the Square where I connect to see you. He found that explanatory. Then I told him about my sodium levels. He told me about some antipsychotics that could be for mood disorders and I said those aren’t really being used solely for mood stabilizers. I then listed what I knew and the story of Tegretol and Trileptal, how they came to be. I also gave a story about how I told a resident how come they didn’t show in a tox screen, though I don’t remember which was qual and which was quant. I just knew just because you were on Trileptal, you weren’t going to get a level unless you ordered it as a sendout test.

So I decided to go to the place I wanted to order Chinese food rather than have it delivered. I was still grumpy. My mother called and I let it go to voicemail. I didn’t want to talk to her, or to anyone really. Just let me listen to my music and leave me the fuck alone. So the bus finally came. I got to the stop where the food place was and they were closed. ARE YOU FUCKING KIDDING ME???????? I had to wait for another bus home. The bus driver was an asshole. He didn’t lower the bus so I could get on. I tripped and had to start again. Then after I waved my pass he didn’t wait till I was seated. I wear a fucking AFO brace. But I guess that doesn’t mean anything to anyone!! I am going to report him.

So past two days I have been getting UPS notification that a delivery is coming my way but I don’t recall ordering anything that had a UPS delivery. I was very perplexed. I come home finally, my belly growling, pissed off, with two packages for me. One was SE Hinton’s book that I ordered. The other was from Wiley. Odd. I don’t remember ordering a book from them. I get to my room. Open the package and it is this:

A little background. Someone 2-3 years ago were searching specifically for a citation that John Sommers-Flannagan had written and I wrote about in one of my papers on my blog. I made mention when I found out Dr. John was on Twitter. We have been in touch off and on. He post maybe 2 years ago he was looking for people to edit his coming book on counseling. I responding saying that I don’t have a professional degree but I have plenty of lived experience. He took a chance and I DM’d him my private email. He sent me a chapter and I read it/edit and gave my thoughts on it, etc. Then maybe a year ago he sent an email about acknowledgements. I wrote back to him with just my name as I didn’t have any credentials. (still no clue where the National Institute of Education came from). Today I got the book and it totally made my day!!! I am so fricken happy. I ordered my Chinese food while sending pics every where and to everyone! So that is how I got in the book.

What I started writing yesterday and stuff I did today

What I started writing yesterday and stuff I did today

So this is what I wrote yesterday:

I am so flipping enraged. Just came from seeing my pcp. He was interested in how I was doing with the med change. Jerk said he was extremely skeptical about opioids helping me at all. Well take this chickenshit, my pain is reduced 50% aside from flares, which nothing seems to help. He was glad he was wrong. But can you imagine the big “I told you so” if I got no relief? I can’t believe the ignorance. Totally dumbfounded and hurt I would left to deal with excruciating pain and nothing to treat it with when there is something to treat it. So anyone who says opioids don’t work for CRPS, THEY ARE FULL OF CRAP!! So I then tell him my back has been acting up due to weather changes. My lumbar spine and sacrum do not want to move. Asked if taking ibuprofen was ok and he says it has risks of heart problems and hypertension. But mostly stomach issues. I should use it sparingly. Why the fuck is this over the counter if it causes so many problems? And doctors prescribe it like candy or more potent NSAIDs like naproxen or diclofenac?? Idiot. I just rolled my eyes. I cannot believe this idiot is practicing medicine at a world class hospital.

Today I find out that he is worried about my sodium levels as they dropped again since the last time I had them checked. He is going to talk to my psychiatrist and has ordered blood and urine tests to rule out what is causing my blood sodium to drop other than medication. I wrote back to him and asked what the tests were (I am a lab geek, after all) and if the PCOS I have might be affecting my pituitary, thus messing up my blood levels. I don’t think I will get an answer tonight as I thought of this around 1900. He did tell me that if I felt ill to go to the urgent care.

I spent most of the day clearing off my bed so I can change my bed sheets. I had to do it in increments because my back kept flaring if I stood longer than 10-15 minutes. Then I couldn’t find my reacher on my bed so finally cleared off nearly everything except my office essentials like my journal, laptop, and book that I am reading. I made pancakes this morning and then had buffalo wings for dinner. I was so sleepy after dinner that I had to lay down. I was hoping to sleep but I couldn’t.

Tomorrow, I will be able to change my sheets. I plan on washing them and my blanket. I have another set of blankets that I will put on. They won’t be as warm as the Red Sox fleece I am using now. I think I am going to put the hospital blanket on and then the Red Sox. That should keep me warm and if I am too warm, I can always take it off. I have to keep my leg warm because the AC might make my foot cold. Plus I get cold and like to get cozy under the blankets at night.

I was feeling really down last night. Pain was elevated and so was my suicidality. I wrote a blog. When I finished it, I sent it off to a couple of suicidologists, including the president of the American Association of Suicidology because something she posted on Twitter bothered me and I had written about it. She tweeted me in the morning and we had a discussion but I could tell she wasn’t getting what I was trying to say. It amazes me that these people want to prevent suicide yet belittle the thoughts of those who actually live with chronic suicide ideation. She had written a study that had showed more than 132 people are affected per suicide. It was dispel the thoughts that Dr. Shneidman had that at least six people were affected. He said this but never studied it. No one knows where he got this number and he is deceased so we will never know. Her study was important. But what the bereaved suicide loss persons don’t realize is that saying loved ones will be hurt and others will be affected, some how guilt trips them into staying when they do not wish to live anymore. I was trying to explain this and we weren’t getting anywhere. Depression already caused excessive amounts of guilt. Add this information and it is overwhelming, which is what I was trying to get at but obviously wasn’t explaining right. She is a very intelligent person but I really think that lived experienced people and others who think of ending their lives might be too painful for her to deal with and so gets offended. I have seen it happen to me one too many times. Yes, it does make you stop and think of who you are hurting when you are thinking of taking your life. But then you (the suicidal person) have to wonder, is my suffering greater than those I love? And if this was a physical, terminal illness like cancer, would they still feel the same?

It just bothers me so much that people who are already suffering from huge amounts of pain, physically and mentally, still go on with their lives because they basically feel trapped. I know I do. I feel trapped by not want to cause pain to my family and friends with my death and the pain I already have that I was so desperately to end. It is tearing me apart some days, especially when the dawn approaches and I no longer have such intense feelings of ending my life. One of the suicidologists was glad I had made it through the night. She was the only one that said that. I am sure the others would have thrown my ass in the hospital if they could. I write a lot about my feelings because I don’t have a lot of support. It is also cathartic for me to write. If I lose this, for whatever reason, I know I will die. I think I even emailed my psychiatrist last night about why am I still around? Why am I still here. And will she let me go? I was half expecting a response or a phone call. I got neither. I see her next week so I know I will talk about it, least I hope to if I am not chickenshit. She sometimes scares me because she has this way about her that when she says something, I have to listen and “follow orders”. I have never not done what she said when she says it in that tone she has. She has known me for a long time. I respect her a lot and she respects me a lot. She looks up a lot to me because I have been through so much.

Next week is going to be difficult as I have a lot going on. But right now, all I care about is changing my sheets and reading Harry Potter as well as keeping track of the Sox. Oh, almost forgot, the blog that I wrote early this morning was chosen by some paper and published on their platform. Pretty cool!

About depression that I have to get off my chest

About depression that I have to get off my chest

There has been a LOT of talk lately about depression being treatable. Let me say first, that for some, it is. Therapy has been helpful to some in dealing with it. Medications and therapy still prove to be useful in treatment of depression or actually any mental illness. It was once thought that schizophrenia was a medication only illness. But I learned through one of my suicidologists that isn’t always true, as there was a paper written by him about he helped decrease an individual’s suicide risk by seeing him weekly or more if suicide was more present. It helped the patient feel cared for. If I find the article in my files, I will share it if you care to read it.

I am in no way saying you should NOT get help if you are feeling depressed. But my experiences (which are not the same to the whole depression population) beg to differ. I have yet to find anything that helps the mood shifts. Since my long time therapist stopped seeing me for reasons I have still yet to learn, I have been the most unstable and hopeless I have been in the 16 years I was in “treatment” with her. We had our disagreements about treatment. Transference and countertranferences were helpful at times but were no long lasting. She stuck with the way she was treating me and I stuck to being, well, depressed and suicidal.

What I have to get off my chest is that sometimes, depression is untreatable in a small percentage of people. There is such a thing as treatment resistant depression. Despite ECT (“shock” therapy), medication, and therapy, one can still feel depressed. There are a trillion reasons for this. Sometimes it has to do with the trauma one experienced. Some has to do with biology itself, that the genetic predisposition of a person makes them depressed. Other times it has nothing to do with a trauma or situation. It just happens that you start withdrawing from life, slowly at first and before you know it, you can’t go back to things you loved because, frankly, you are too depressed. Sometimes you maybe too depressed to seek help and a friend or family member needs to push you to get it. The thing is, depression still exists despite treatment. Some people have suffered depression for years and have never told a single soul. They are the small percentage that still go on with their episodes after they pass. They are less likely to die by suicide. Hell you don’t NEED depression to end your life. It has happened. Look at the Shawshank Redemption movie. The warden was “well” mentally and rather than be arrested and humiliated, he killed himself. Would anyone have thought he would do such a thing? No. And that is what my point is. Although we know what the risks are for suicide, depression and mental illness is only a small window into those risks. There are some people who die that have no history of mental illness yet die by suicide. I won’t go into more discussion about it because this is a loaded issue. I suggest reading the Myths and Facts of Suicide by Thomas Joiner. It is a really good book about what I am talking about.

I can only talk about my experience, no one else’s. I have been depressed since I was 8, maybe younger. I only know this because I started thinking suicide was a good idea at that age. I was 10 when I tried to end my life for the first time. I suffered from depression and after taking Prozac, became bipolar because the medication caused mania like symptoms. Not once during my years of being on medication AND therapy did my thoughts of suicide leave me fully. Neither did depression. There were brief times where I felt contentment. I honestly don’t believe in happiness. Like anger, it is a fleeting emotion and doesn’t last. But feeling contentment does happen for me and I sometimes feel comfortable in it. I know it isn’t going to last long. It never does. The depression always finds a way back, maybe not right away but it does come back. Despite some of my successes in life, graduating from high school, getting my Associate’s degree, publishing two books, I still was depressed. I was elated for a little while but it was fleeing. Just like when I wrote the article for the New York Times. I couldn’t believe and still don’t, that it happened. I still have the check that one day I will frame along with the article. But soon after all the paperwork was filed and I was waiting for it to be published, I was intensely depressed. The New York fucking Times was publishing something I wrote and instead of being happy as a pig in shit, I was depressed. I learned that no matter what my success in life was, no matter how much money I made, good job that I had, I was going to always be depressed. I could do one of two things. I could accept that this was the way it was always going to be or fight it. I chose to accept it.

I knew I had been fighting it since I was 16 that I would always have to take medication for my mental illness. It wasn’t easy but I knew if I was to avoid a lifetime of hospitalizations, I would need to take medicine to hold off the demons. Yet despite this theory, I was still hospitalized. Many times. Some times it was like a revolving door during my worst episodes. In 1994, I suffered a huge major depressive episode. I was hospitalized almost every two weeks and then for two months because I tried to end my life. It was one of the lowest periods of my life. I couldn’t bring myself to do anything. Showering didn’t matter. I gained a ton of weight from the meds I was put on. I started living an almost double life. The life the psychiatrists wanted to see and who I really was at home, when I was by myself. Hopelessness was rampant and totally lost on me. I can’t say that I got better. I just got better at hiding from myself, to keep the darkness at a minimum so I wouldn’t be committed at the age of 19 to a state hospital. Even then the façade I built was hard to put down. I just did what I was told to do and when I felt like acting on my feelings of suicide, I told my therapist or psychiatrist, which inevitably led to another hospitalization. But the hospitals in the 1990s were different than they are today. Today they are nothing but holding pens. Two maybe three days you are in and then you are out. If you need more help and have an outpatient therapist, you see them. You don’t need to be in. Maybe you stay for a week or two. But never more than that. Insurance won’t pay for it. And you don’t really get “treated”. You are watched 24/7 to make sure you don’t harm yourself. You might find a “treatment team” that listens but that is ALL THEY DO. They don’t help you in what you came in for. That is for you and your outpatient therapist to work out. If you don’t have one, you might get referred to someone. I’ve never been in that situation so not sure how that works.

I have lost faith that my illness is “treatable”. Seems no matter what I do, I end up depressed or just stay depressed. I am okay with that. I’ve known for a while that there is no longer an antidepressant out there for me. I am grateful my mood stabilizer still works. I just hope that it does fuck up my sodium levels and I need to some off it. Then I will be really screwed. In that sense, I still take my meds because they help. I no longer have commanding voices every day and the accompanying paranoia and delusions. I have to take a med for that every day. But therapy is still elusive. I honestly don’t know if it helps. Talking with someone honestly, like writing this blog, has been useful. Sometimes it feels good to talk to my therapist and leave knowing that someone understands, even if he thinks I am crazy. He said that he is “taking my lead”, which I am not sure about but it is a learning curve like anything else. And I will stress again, that if you aren’t comfortable with the person you are talking to, if they make you uncomfortable or just not getting it, find someone else. There are a lot of different therapists out there. A lot of different degrees as well (but all should be licensed by the state you are in, if they aren’t, I wouldn’t see them). It will take some time to know if they fit with you. The average is about 3 or 4 sessions. Any more than that might be a waste of time if there is no connection.