a little bit of everything Monday

A little of everything Monday

I got about 5 hours sleep. I then went to Starbucks after making a PB&J sandwich for lunch. I ordered 6 shots of espresso and a donut. I wrote a little bit before I had to leave to see my psychiatrist. I kind of left early so had like a half hour to kill. I didn’t want to check in that early so I just found a bench outside the office and wrote a little more in my journal.

The appt did not go very well. I told her about having to go through withdrawal last week because I was late in taking my pain meds and she called me an addict. I tried to correct her saying I was dependent but it fell on deaf ears. She kept repeating addict and it make me hurt so bad. I seriously didn’t expect this from someone I have known nearly 25 years. She was being ignorant but it hurt none the less. I vented to my support group about it. I would school her later.

After the appt, I went to the Sprint store to change my name now that I have changed my license. It took maybe 10 mins. Crap. I still had like 2 hours before I had therapy. I went to a Starbucks by my therapist’s office and just ordered hot water for tea. I made Earl Grey. I waited for it to cool so I wouldn’t burn myself. The water was wicked hot. I wrote in my journal about what my psychiatrist had said. I then posted to a Facebook pain group if they had any information about the difference between addiction and dependence. The bathroom at Starbucks was out of order so I left to go to my therapist office. All the drinking fluids was building up and needed relieving. I just made it to the bathroom in time.

Therapy sucked. I told him about what my psych said and he said I should ask her what she meant. After discussing that, I just rambled about anything to make the time pass. I didn’t bring up mommy and daddy issues but the idiot asked me again what was my pain like. I swear he thinks I am making shit up. I told him it varies and depends on where the pain is. It is usually half my foot/ankle going outward starting about the 3rd toe. I told him I got depressed and hopeless and it was hard to keep up the mental stuff with the PT exercises the PT gave me. He said just do them. Yeah, cause it is that fucking easy. Are you serious?? He just annoyed me more than my psych ever did in all the years we worked together.

I get home and on the way, my cousin called me. He was unable to call the bank like he said he would to get information for me. Lazy ass. He said he would tomorrow. Sure, and I will win the lottery too. His mother really irked me because she called me while I was on my way to my psych appt. She wanted to know if my mother was okay. I told her she had to go to the bank, which her brother was going to take her. My mother wasn’t answering the phone. Well, maybe she was in the bathroom getting ready or taking a shit. I don’t know, I am not home. She got me fricken worried and all worked up. My psych sensed it when she saw me. I told her I would call my mother when I left as I was sure she was fine. She was. She was out and did some errands, which she obviously didn’t tell her sister. HOW DARE SHE! LOL fucking stupid bitch my aunt is. Freaks out all the fucking time over NOTHING!! I was so heated!

I get home and had something to eat before going to my room. I had a pile of mail. I brought it up to my room and then checked Facebook. The pain page responded with some links. I clicked on one and there was another link for a medical article on addiction and dependence. I opened it and read some of it. According to the article, because my pain is not adequately treated, I would have pseudoaddiction, where I watch the clock and appear “drug seeking” for relief of pain. I sent the PDF (attached to this blog APS_consensus_document here) to my psych along with saying that I felt hurt when she called me an addict. Then the tears flowed and I was a sobbing mess. It took me a good while to get composure. Then she responded and I bawled again. Fuck. She said it was not her intention to hurt me and that she didn’t want me to be dependent on the narcotics. Too late for that. And for that matter, I am dependent on my mood stabilizer, which I responded back to. I told her I didn’t want to be on opioids but the benefits outweighed the risk. I knew and accepted this just like I knew I needed meds for my mental illness. I told her the example of how I withdrew when I forgot to take my mood stabilizer for two days when my father was ill. I honestly didn’t think anything would happen but I had the same type of dizzy spell I had last week when I missed my pain med dose.

No one wants to be dependent on their meds but it happens to the best of us. I knew when I was 16 I would need to be on meds the rest of my life. There was no doubt about it. I had severe mental illness and the only way to manage it was through medication and therapy. Unfortunately, the therapy part hasn’t worked out yet. I can’t say I am cured, because I still have bouts of debilitating depression and suicidality. But lately, the pain has fucked up everything. Now I am depressed and suicidal due to a medical condition, Complex Regional Pain Syndrome. And there is no fucking way to control it because it is as unpredictable as the New England weather. I don’t even have the same pain twice during a flare up. It is all fucking different as night is to day. The only type of pain that is somewhat consistent is the fucking malleolus pain and the pain that is where my outward ankle and foot merge, just under the malleolus moving toward the foot. This pain drives me up the fucking wall. I had to text the Crisis Text line last night because I needed someone to talk to at 0100. I didn’t get a “counselor” till 0200. By then, I was sleepy and hungry. I made something to eat and then I said night to the “counselor”. The whole thing was useless. She kept wanting me to do some coping skills. I kept wanting to talk about dying. She didn’t want to hear it. How is that helpful?? Next time, I just write in my journal or maybe blog and hope the cops don’t show up at my door.

The temp dropped to 32 degrees. I had to shut the window because it was flipping freezing in my room. My feet got cold as ice so had to put on thermal socks. Then I had to use the bathroom again. I figure I would take my night meds when I came back to my room. My mother wanted me to make her bed. I did. Then got tucked back to my bed only to realize I didn’t take my night meds! Fuck. My ankle didn’t like me getting up again. I quickly took them and then got back under the covers. I put on a long sleeved T shirt. If the heat kicked on, I will take it off. Shit my foot is burning right now. Neurontin time!

Oh, while I met with my psych, we discussed the drug Vimpat. I wanted to make sure there were no interactions with the Trileptal as they both work on the same sodium channel thing. Last thing I need is my sodium (blood salt) to drop. She was okay with me trying it so I emailed the neurologist to go ahead and call it in. He hasn’t so far. The script for a refill of Trileptal my psych put it, never made it to the pharmacy. I had to email her again. For some reason, it had to be reviewed by the pharmacist so it is delayed. I’ve been on this med for over 10 years. If it is not ready for pick up tomorrow, I am calling to find out why it is not ready. If I didn’t have all my meds at this pharmacy, I would switch to another one. But this one is the closest to me and has better service than Rite Aid.

Thanksgiving 2017

Thanksgiving 2017

I woke up around 3, my foot still ablaze in pain. I somehow managed to go back to sleep and then woke up at 11. I only got up because my bladder said I had to. Holy pain!! I barely made it to the bathroom. I wanted to brush my teeth but I couldn’t stand too long. I went up to my room and took pain meds. I really just wanted to stay in my bed all day but knew that wouldn’t fly with today being a holiday.

I went back to sleep for a bit. My brother in law never replaced my ceiling fan. He was on call at his work and of course, got called in, three times! Guess there were problems with water heaters. My sister called me to say dinner was ready around 1400. I put the boot on and went to my sister’s. I am glad I didn’t have to leave the house. By the time I came down, everyone had made a plate. I made one and then sat down at the table. My goofy sister wanted everyone to go around and say what we were thankful for. When it was her turn, she kept on being a goof and so was naming everything and anything. The turkey was made by niece. It was ok, though I like when my mother makes it. I later found out she put in a clove of garlic. That was why it tasted different. I was so full for dessert but had a cup of tea and some pumpkin pie. The other pies that my brother in law bought were not good. He said he is going to take them back. I hope he gets a credit for them. They were terrible. The apple pie dough was not cooked!

My mother went upstairs after dessert. We were all just hanging out when we heard a thump. We asked my niece to go upstairs to check on my mother. She was moaning so we all went upstairs. She had tripped over a chair and fell on her knee replacement knee. It bruised up right away. My brother in law helped get her up and then we all helped her to the living room. She won’t be going upstairs to her room tonight. She is really sore. I feel really bad she is hurting so much. I gave her some ibuprofen right away to help with pain and inflammation. She is icing it but can only do it for short periods as it hurts to touch it. She has neuropathy from the diabetes so touching any part of her leg hurts her. I just finished putting a sheet on the couch, getting my mother’s night meds, and her pillow for her. My foot is thanking me in HUGE shocks of pain.

Other than helping my mother around the house tomorrow, I am not planning on doing anything else. I am going to try and stay off my foot or be in the boot if I have to be walking around the house. My foot/ankle just don’t want to move the way they should and if I try to, they hurt like hell.

The radiology report is finally in my online records where I could read it. Doesn’t sound too good. I don’t know if my bones are going to get worse over time or not. Never know with CRPS. I know that it could spread, either up my leg or to other areas of my body or even to my body itself. There are a few people in my UK support group that have it in their organs. It is a very painful condition. It also looks like the “opioid epidemic” is not just in the US but in the UK as well. Someone in the support group said their pain doc just told her her body is “fine” and that she doesn’t need pain meds. Even her GP, who doesn’t know her, cut her pills. I hope she is able to find another doctor that can help her and treat her pain. I would kill myself if I didn’t have the few pills that I have. I know that I want to be put on a longer acting pain medication for night time, but don’t know if I ever will. The chances of me having to increase the strong pain pill dose might happen down the line. I try not to take it but it seems to be helping with this bone pain that isn’t being helped by the regular pain meds. My psychiatrist thinks I should be on methadone for pain control but I really don’t know anyone on it for that. I just know of people with substance use disorders who take it. She has wanted me to be on this drug for a long time. I honestly don’t want to be on it because I don’t think it will help me. I know some people in the UK are on low doses of naltrexone (LDN), which is also used for substance use disorders but in larger doses. I don’t think LDN is used in the US and only certain doctors can prescribe it. What kind of doctors those are, I have no clue. I am guessing substance use treatment doctors, which are a handful of docs. It’s so weird that they want you to be treated for being addicted to opioids, like heroin and illicit Fentanyl, but your primary care doctor cannot prescribe this medicine to treat them. They need to see a specialist or go to a treatment center of some kind to get these meds. And the stigma surrounding addiction furthers prevents seeking help because there is the mentality that it is not a disease, but a character flaw, which is utter bullshit. Addiction is a disease, unfortunate, but with the right help, people can be clean and lead productive lives. Unfortunately, chronic pain patients are the ones suffering because we need the opioids for our pain and do so legally yet are monitored more closely by government officials than doctors. This is because they know heroin, which is an opioid, is not regulated so they can’t go after dealers or those that use it. People don’t go to the pharmacy for those meds. Just sucks because I know one day my meds will be cut off because of politics and my doctor will sign my death certificate. Not the politician, but my doctor who treats my pain. Pisses me off.

holiday myths about suicide

Apparently there is a still a myth that the holidays bring on suicide. The study published today at USA Today (http://www.usatoday.com/story/news/nation/2012/12/05/holiday-suicide-myth/1748351/ ) stated that the highest is in the Spring and summer. July brings 111 while December is “low” at 98. Still those numbers, to me anyways, are high. And that doesn’t account for all the suicide attempts or near suicide attempts.

While there is the myth that the holidays brings more suicide than any other time of year, you still have the holiday classic “It’s a wonderful life” to show that there still are some people contemplating their life during the “happiest of seasons”. There is no data that supports my saying this. It is just a well known idea that people should be happier this time of year than the rest of the year. While mood disorders such as Season Affective Disorder is in full swing, there is no evidence that these disorders bring about more suicide. If anything, people want to get help so they can change their lives and be in a better relationship. This is why during the holidays, detox goes up during time of year more than any other. People want to become happy but they do not understand that it is a long road from happiness when you are at your rock bottom. I am reminded of a young kid, we’ll call him Jay for confidentiality purposes. He was with me while I had my hospitalization a few years ago. He was a meth addict and wanted to get sober for his kids sake. He was doing the program of staying sober but he had a lot of challenges. He was on the street and his current resident was the hospital. He reminded me that it is possible to look forward and survive despite having a drug addiction. I don’t know where he is now but I do hope that he was able to leave the hospital with new tools to help him cope better with this addiction issues and that he was able to find a sponsor to help guide him through the rough waters ahead of him.


Been struggling the past few days. I have been thinking of my friend in South Africa who is struggling right now with grief from the loss of his best friend and soul mate. His blog details the pain he is going through and it made me think of my own grief I have with the life I used to have. Of being able to walk without pain, life without taking any meds other than for psych, and being able to work without worry. Now I have no job, walking is no longer possible for long distances and yet I still think I can do it if only if I try harder. I tried for more than a year working two jobs that were physically and mentally exhausting. I went from working 60 hrs a week to nothing in 16 months. Now I don’t know if I can ever work again because soon as I get stressed or the pain levels get too high, I have a psychotic break and develop delusions that I believe are real. Like cutting my leg, I know it will not cure anything yet I can’t help but feel there is a foreign body in it causing the swelling and if only that swelling was cut open, I will be healed. But no doctor believes me. They just tell me to take my little pink pill to quiet the voices down and suddenly the delusions become just that and I realize just how fricken crazy I am. I know one day I will give in to the internal hell I face every day and try and open my leg up to see what is inside this lump on my leg. It is the cause of my grief, of my suffering this raised bump that some days you can’t see and others you can.  My friend has a different kind of grief but I know he suffers the same way I do with this bloody nerve condition we share. It has robbed us of our sanity, our livelihood, and our dignity. It bothers us more than we let on to people because we have to put a brave front on all the time and minimize just how bad the pain really is.

The other night I was contemplating ending my life in a few days time. I know I can really do it. I have the equipment and all that is needed is just a time and place. I know that I can really do it but do I want to leave my friends and family, who I know will be better off without me than with me living? I am tired of struggling every day, of breathing in and out and knowing nothing will change. My contentment period has expired and I want to expire too. I don’t understand why I should go on living when all I do is suffer. People have told me I am a good writer but so far it has not paid the bills and let me live a life that I can call my own. I just have trouble with the fact that I am so miserable. I am a negative person. I cannot be a positive when I do not see the light of day. Yet I just continue to stick around because my friend in SA needs me, my nieces and nephew need me, my therapist needs me.  I feel like such a hypocrite when I am trying to prevent suicides when the only one I am truly trying to prevent is my own. I read about suicide day and night and realize that I don’t know how I survived all the attempts I made over the years.  Reading about suicide makes me realize that statistically I should be dead. Yet I am not. Grief has frozen my heart to love again, and this nerve condition takes every ounce of strength not to throw in the towel after each day. I would love to work again and walk around the block without hurting. But that is no longer possible. I walk with an AFO (Ankle Foot Orthotic) and it is my help aid and my hindrance. People see that I am disabled. It has taken me a year to come to this conclusion and it sucks. Realizing you are disabled is no happy feat. It makes you wonder when you ever will be normal again and after 11 yrs of dealing with the pain and agony of nerve pain, I called UNCLE. I had enough. My friend, bless him, still keeps the fight to support his family and his friend’s son. He gets around in a wheelchair. He has more pain than I ever would dream of but the difference is that his is controlled better than mine. The US frowns upon narcotic use and so I am limited in my pain relief. I only take it when I have pain that is an 8 or higher and days when it is on the cusp of being an 8, I try to stick it out. I don’t do this because I like to be in pain. I do this because the stigma around pain medication makes me. My family doesn’t understand the difference between addiction and dependence. Actually few people do unless properly educated or if they also suffer from chronic pain. I can tell you I don’t misuse my meds. I don’t take it to feel high or to change the way I feel psychologically. I don’t take more than what I am supposed to unless I am close to being in a suicidal rage because my pain is up there and I can’t take it any longer. This means I am not addicted to it. I can go a few days without taking it, but barely longer than that. I can’t say I am dependent on it because on days I don’t take it I don’t notice being sick or worse than what I normally feel. I am chronically exhausted by pain and mental anguish that I hardly notice if I am dependent on the drug. My mind doesn’t think, oh I have not taken any pain meds today so why don’t I take it for the hell of it. I just don’t think that way. Some people do and that is a tragedy. And those are the people I am mad at because they ruin me getting the help I need from pain management doctors. If these doctors truly were able to help me with this and take care of my pain, I probably would NOT have had to file restrictions at work and then be out of work because those restrictions were not accepted by my employment.  That is why I am out of work, because I can’t walk around the lab anymore. It is like a huge city block and walking around and around for eight hours just about killed me. Hell after four hours I was ready to collapse in pain and sometimes I did. I’d have to leave in the middle of my shift because the pain got so bad or I had to rely on my coworkers to bring me work because I couldn’t get up off the chair and get it myself.  It was at times humiliating to be in that kind of pain and not have anything to take for it and then go home and suffer all night long. The hours I lost losing sleep were many.  I would get some relief after a few hours sleep but then it would be time for me to go to work my next shift. I sometimes would call out if I felt I didn’t get enough sleep. You can’t be dealing with a person’s lab values and have no sleep that could cost them their life because I am too sleepy to pay attention. What is worse I could not take any pain meds while working so I had to suffer through my shift without any relief. It sucked big time but I had to be alert in my duties. I had to stay sharp.  As much as I sometimes hated my job, I do miss it. I miss some of the people I have developed close relationships with over the years I worked there. I miss the routine of work. This is my grief and it hurts like hell

Pain sucks no matter how you slice it

Since yesterday at 6 am I have been in pain with my ankle/foot, all due to the lovely nerve condition I have called cauda equina syndrome. I have the risidual effects of it and it sucks. No doctor can do anything about it and I’m going insane. So seeing as I can’t do anything about it until maybe my pain meds kick in, I’m blogging about it.
Being in pain for the past 24 hrs sucks. I couldn’t wash the dishes in the sink, can’t shower, couldn’t go to my cousin’s graduation party today all because I had crappy sleep and am in a really bitchy mood. I’m usually an ok person but lately I have been getting more and more pissed off about anything that is said the wrong way or looks the wrong way (and I don’t know what way is right by the way). I just know I am hurting and no doctor cares that I am in pain 24/7. Sure I have a lot of friends that care and would love to see me not suffer as much but other than soothing my aloneness, they really can’t help the gnawing, aching, bursting bouts of pain that I get. It is no longer nerve pain because my dear friend neurontin would happily take care of it. Nope it is a physical pain that requires the use of narcotic agents that everyone says is bad and addicting. Here is where people go wrong between addiction and chronic pain. See those with chronic pain rarely abuse their narcs nor do they get high off of them. If they do, they probably are not in the type of pain they think they are in. Addicts seek out pain meds to get high. They don’t have pain they just need something to take their jones away and always require higher levels of meds do it in. I am in the chronic pain categrory and I can tell you I rarely take more than 4 pills a day. But seeing as it has been almost 48 hrs without relief, I’m going to take my 5th pill of the day to get some relief I hope. Because of I don’t get any relief soon, I know the psychosis is going to start and then things are really going to go bad. Mostly the psychosis is because I am under a great deal of stress and being in chronic pain is a huge stressor.
Sadly before this condition I thought being in physical pain was better than psychache. But it is not. True there are analgesics to help ease the physical pain but not when it goes on for hours on end. The only time I can get some relief is if I don’t move my foot/ankle at all. See there is a muscle/tendon that I’m constantly inflamming and it is why I have this pain. It is called in medical terms the peroneous brevis and longus muscle and tendons that are hurting me. Again all because of nerve injury because I have ankle weakness which causes fatigue which then leads me to walking whatever way I want to keep walking or going up and downstairs. I hate it but nothing can be done about. No surgery, no injection, nothing. Nothing even shows up on an xray or mri but that is where the pain is or is it along the S1 dermatome? I don’t know and don’t care. I’m just tired of being in pain every hour of the day for days on end!!
See the psychosis is bad because the voices have been telling me if I cut the tendon, I will be better. It will solve my problems. Only thing is if I cut I might not be able to stop the bleeding so that is why I haven’t done it yet. I am that desperate for pain control I would take a razor to my skin and excise the bad stuff to alleviate it…
So no mattter how bad I want to slice and dice, I have no measures to control the bleeding and I really do not want to soak my bed or my rug with my blood. Only option I have left is to suffer…and blog about it 😦