Tag: CRPS (formerly RSD)

traffic and therapy

by Midnight Demon, posted in blogging, chronic physical pain, depression, mood disorders

Today I realized the reason why I like talking on the phone with my therapist than seeing her in person: TRAFFIC! I left my house at ten o’clock and literally got there around 12:30. Normally I get there around noon but the traffic when I got to route nine, well, was just horrible. I don’t know why they have traffic cops at a construction site when they DO NOT DIRECT TRAFFIC!! There was at least a three mile back up and they were just sitting in their cars watching! I couldn’t believe it. But then it is typical of these guys. I don’t know what they are supposed to do, really, other than get paid overtime with our tax dollars for doing nothing. I want that kind of job.

My foot is better today, though I didn’t think I would be able to walk down the street. Half way down the block I needed to walk to get to the bus stop, my ankle started hurting really bad. It is still throbbing and I can’t take anything for it because I still need to pick up my sister as I have her car.

I was proud of myself today as I know my trucks. There was an F350 behind me on the way home and I knew that it was just by looking at the grille of the car. I love the Ford trucks. I fell in love when my friend’s stepdad picked us up at the airport when I first visited his parents. We spent a good amount of time in the truck as we had a long drive from Omaha to his hometown of Sargeant. The ride was nice and roomy, my first time in a truck and I was in love! I always wanted to own one but I don’t think I can drive one. I have a hard time with perception and am afraid of side swiping another car. That is why I am afraid of driving my bro-in-law’s jeep cheroke. It is a wide vehicle and new so I don’t want to damage it. I am not saying I am a horrible driver, I am not, but if something scares me I tend to stay away from it.

My therapist would call that trauma. We talked about that today with that weird dream that I had about my back surgery. I dreamt about it a few days after I got discharged from the hospital. I still have flashbacks of everything, from the time I was told I had CES again to getting admitted the next night and then surgery the next morning. I remember waking up with my left leg feeling weird. I thought it was just post-op stuff but it turned out to be a missing disc fragment was imbedded on my nerve root. I lost total feeling of it. I had no strength in it. I couldn’t lift it up if you paid me a million dollars, it was that weak. It took me a month to regain strength and another four months of physical therapy to get back to my baseline. I shopped around for a physical therapist that had experience in nerve injury and cauda equina syndrome. I didn’t go to the Spaulding rehab because 1) they were expensive and 2) they were not willing to work with me. I knew that if I did go with them, they would want to do things their way instead of what was right for me. I found someone at a local hospital rehab center that helped me get back to where I was before surgery and then a little more. I had to fight for the extra sessions and have my surgeon, then my primary care doc order physical therapy because I did not want to go through what I went through the first time I got this bloody condition, which was just surgery over, care ends too. I still had foot drop in my left foot that took months to regain strength the first go round. I wasn’t going to let that happen with my entire left leg.

Turns out that no matter what I did, this stupid, fucking condition ended up disabling me anyways. I still ended up with an AFO (ankle foot orthotic) for my left foot. I still end up with panic when my foot flares up in pain and I think that CES is going to happen again. No matter how much time has passed, and it has been years, I am always going to have that trigger soon as I can no longer move my toes because of inflammation/pain. And because I still have a fucked up spine nice and full of herniated discs, there is a chance I will end up with another diagnosis of CES. I fear that if I have to have another back surgery, I will need a fusion. If that happens, I will never be able to work again. As it is, I can’t walk more than a few blocks and stand for more than twenty minutes. The thing that I have to be aware of is trying to lose weight, which is tricky and wicked hard. But one doc told me that even if I weighed eighty pounds, I still would have a messed up spine. I just have to watch what I lift, making sure to do it properly, with the legs and not the back. But I don’t do much lifting of anything other than my Gatorade bottles. My biggest fear is getting rear ended by another car. That will hurt!

my heating system sucks

by Midnight Demon, posted in blogging, chronic physical pain, depression, mood disorders, suicide

Today started off ok. I got my niece ready for school and walked her to school. We took the way I normally take because there are no inclines or hills, which is normally good for my foot. But I guess all the up and down stairs yesterday and the few that I did today to get my clothes finally took its toll. My ankle and three toes are aching like no tomorrow and feel like I have my foot submerged in a bucket of ice water. I have it wearing a sock and under 3 blankets. There is no warming this foot up and frankly, I don’t want it warm because I will be in more pain. It will get warm then VERY HOT, like it is on fire. Happens all the time. The weather is very cold today even though the weatherman says it is 56 degrees. They are lying as Google just told me that it is 42 degrees. It is so cold in my room, despite the heat being on, that I think my radiator finally shit the bed. It was hot last week. I don’t know what happened. Maybe I didn’t turn the heat up high enough. My heating system sucks. It has to be the worse heating system on the planet. The only way to get it to turn on is putting it higher than 70 degrees. Then the house melts, you lower it and it stays warm for a little while. I am not as cold as I was earlier but it doesn’t matter. My foot has its own heating/cooling system since it has nerve damage. That is why I try to keep it as warm as possible during the colder months of the year. It is not easy as even in the summer it will be cold. I have to wear socks 90% of the time. I miss being barefoot but I just can’t risk getting my foot cold, especially as we have ceramic tile floors. They get REALLY cold, and fast.

I did nothing this weekend but vegetate. I needed some time away from the blog and my book. I got wicked stressed out Friday and didn’t want to risk another psychotic break so I stepped back. I had to for my own sanity. I thought I would be able to get back to editing today but I didn’t sleep very good last night and then had to wake up early for the kiddos.

Today’s WordPress challenge is about Dear Abbey. I thought about posting a good piece of advice but that is not what my blog is about. Most I have is to have a good therapist that is willing to work with you, and that goes for all professionals, from doctors to physical therapists. If the doctor already has it in his mind about you before you walk in the door, see someone who has a brighter bulb in their head. It is hard for chronic pain patients to get treatment because these doctors have been sidelined by the fake patients who say their back hurts and get pain medication just to use it illegally or to sell it. But the sad part is that these pain patients are undermedicated sometimes which leads to possible overdoses because they cannot get a flare up under control. I know, I have been there. I might not overdose myself all the time, but when I do, it is for a good reason. And that reason is PAIN. I don’t mean overdose in the sense I take the bottle. NO I DO NOT DO THAT, though I may be thinking that. I mean that instead of my allotment of 4 pills a day, I might take 6 or 8 a day. Fortunately for me, those 6 or 8 pills a day are far and wide in between. My doctor trusts my judgment. I am fortunate that he does otherwise I would be six feet under, NO JOKE. And it all stems from that day that I saw a chiropractor to adjust my spine and she ruptured my disc, permanently disrupting my life forever. I always will have nerve damage. I always will have weakness in my foot. It might not be visible to the world but I can assure you it is felt every single day. My minimum pain level is always a 3 on a scale of 1-10. That is what I live with on a daily basis and my surgery is coming up on 13 years. So that is why my heating system in my foot is all messed up.

ankle chronicles 4

by Midnight Demon, posted in chronic physical pain, depression, mood disorders, psychosis, suicide

Woke up this morning and I am still in fricken pain. It’s so bad that I really can’t move my ankle/foot. It’s the same type of pain I felt yesterday morning that lasted all day and into the night. I slept for about six hours before it woke me up again. I just had breakfast so I am hoping I can get back to sleep. Looks like I won’t be going out today, and if I do it will be comfort food like donuts. I had a good donut at Starbucks yesterday, a raspberry/blueberry one. It was very good. I like their new line of pastries, though it is kind of expensive.

All of this psychosis that I have been having is making me think that life is not worth living. I keep thinking of the studies that show that people that are psychotic are more likely to die by suicide than non-psychotic individuals. Great. Why can’t I go through with what the voices are telling me to do? I am scared though, scared that I might start cutting again because that is what the voices want. I haven’t told anyone outside this blog how things are. My sister wants me to babysit my niece tonight. The only good thing about that is I will have a huge screen TV to watch the game. The little one will be asleep so I don’t have to worry about entertaining her. I have been meaning to tell one of my sisters I am doing poorly but I just can’t seem to bring myself to. It’s not easy telling others that you are psychotic. I told my psychiatrist I was crazy and of course she tells me I am not. OK, like normal people hear voices all the time. And without the stupid “normal” voices, I can’t read like I used to. I need the narrator voice to concentrate while I read. It’s the only way that I can retain the information.

But I am in the middle of a pain flare up. There is no way I am seeking out psychiatric care other than my therapist and psychiatrist. I know that I will be in put in the hospital and I probably won’t have access to my pain meds. That will NOT be good at all. I am so tired of being in pain all the time. I didn’t do anything to my fricken ankle so I am not sure why it’s so angry with me. It hurts all around the bone on the outside of my ankle. It’s like something is crushing the bone, or trying to. It is maddening and despite not trying to think about it, it doesn’t work. The pain is just too intense. I am really hurting and wondering why this is happening to me now. I know that is one of the things that I will be asked when I am in the damn hospital. “What set things off”? I don’t fricken know. Maybe I put too much pressure on myself to complete the book. Maybe it is because I had a dissociative episode and now I am paying the price by hearing voices. I just want it to end, to have the voices stop. I am not hearing them now because I am too tired to listen to them. And somehow when I am in great physical pain, it’s like my psychiatric symptoms are on hold except for the depression. The depression is always there no matter what. And I still feel like I am carrying around black clouds. The thing is, that while you are in the hospital, your medical care goes out the window. They really don’t care about your physical complaints, unless you are having a heart attack or something, then they care.

I am just worried sick about where I will end up and if it will be close to public transportation or not so I can get home without bothering my sister. But if I end up in a faraway hospital, I will need a ride home. I know I shouldn’t be stressing about where I will be placed but it just helps me to know. But none of that matters right now because I am in a pain flare up and until my pain levels are under control, I am not going anywhere.

I had planned on watching college football today and the Sox game but I just don’t feel like it. The Nebraska game will be on at noon today, Sox game is I think at 6, and OSU is at 8. But I just took my pain meds and soon will be seeing Morpheus. You would think that I would be used to taking two pain pills that it wouldn’t affect me now but it still does. Funny how it only seems to affect me during the day and at night, not so much, unless I take an Ativan.

I am mostly packed for my stay. I just need to put in my hormone pills. I hope this works and I don’t get my menses this month. I will really be upset if I get it. Being in a locked psych unit is one thing, but having your menses on the unit is quite another. I am bringing my stuff with me just in case I do have bleeding. I just hope I don’t have to use it.

Damn this ankle pain is so fricken bad. I should probably ice it but I am starting to feel the effects of the pain meds so I know I will be knocked out soon. I don’t want to keep the ice on my foot longer than twenty minutes because that isn’t good. I once fell asleep with the ice wrap on. My foot didn’t like it and was grateful when I woke up and took it off.

For those that are reading my blog for the first time, I have cauda equina syndrome and complex regional pain syndrome that is causing my pain in my ankle. I also have chronic tendonitis in this ankle that no one knows why and has not been helped with standard treatment (rest, elevation, ice, compression). I have nerve damage in this ankle/foot and it becomes fatigued very quickly as I have weakness also.

need for affiliation

by Midnight Demon, posted in blogging, chronic physical pain, depression, mood disorders, psychache, suicide

Been in a terrible mood today. I am glad my therapist doesn’t get all pissy and aggravated with me when I tell her that I am having a bad day and go away. Actually the more I tell her to go away, the more she sticks around and wants more sessions. I am glad today is that last of it and she didn’t volunteer to be seen tomorrow. I wouldn’t have been able to handle it. Already saw her twice this week and today I barely got by. I just am in a deep rut and though therapy usually helps, it sometimes make things worse when all you want to do is put the covers over your head.

I went out today. I walked a lot too. I know I am probably going to pay for it but I don’t care. I wanted a roast beef sandwich from Kelly’s and seeing as I am carless, I had no choice but to walk. I thought about taking a cab but I didn’t feel like paying $20 or more for the ride.

In therapy we talked about my manuscript. I don’t know when that got to be part of the therapeutic conversation. I just look at the binder I have it in and want to trash it or burn it. It just seems like a daunting task to me to edit this monster of pages. A fellow blogger has offered to read it but I don’t know if I am ready for anybody to read it except me, though I have no intentions to right now. I have to move stuff around and add some stuff. I think I am going to add a few blogs here and there as chapters. I know my Knackered blog is going in as a chapter. I did a stat summary and it is my most popular blog, with over 700 views alone. I also think that I am going to have the blog post the other night as a chapter, though I think I will delete the part of killing myself. I just don’t get how this book is going to be helpful to people when I am just telling them my darkest thoughts. It’s not a hopeful book, other than I wrote it and I am still struggling with these thoughts. I know my blog helps some people, and I wish they would comment or something. Hitting “like” is just not a real good indicator. Do they like the fact that I am telling people I have thoughts of death or do they understand the struggle or are they just sick and get off with me feeling this way? I never know. Some fellow bloggers or strangers do leave good comments but they are far and few in between. It’s not like I am looking for comments on all my work, but a few now and then would help. I guess you can say that I have the need for affiliation.

I am really tired and don’t know if I will be able to watch the game tonight. I asked my sister if I could borrow the car tonight to drop off my baby at FedEx. My shoulders were hurting me today otherwise I would have dragged the package with me as I was near there today. I think I slept wrong but don’t understand why BOTH shoulders are hurting. I know my neck muscles are wicked tight and not matter how much I stretch I can’t get the kinks out. I am rooting for two teams tonight, Indians and of course my Sox. The Indians need a win tonight because then the Snankees will be eliminated from playoff contention. If the Sox win, which I hope they will, they will have home field advantage. Unfortunately, they lost last night so they will not have 100 wins this season. I am kind of upset by this. I was so sure they were going to have the 100 mark. But I will take 98. The last three games are going to be tough because we are playing the Orioles. They are also in the playoff berth. The ALDS is going to be interesting!!