Tag: CRPS

Saturday Blog 07052020

by Midnight Demon, posted in blogging, cauda equina syndrome, Chronic pain, chronic physical pain, CRPS, depression, mood disorders

Saturday Blog 07052020

I am feeling really depressed today. I have no energy to do anything. I feel like I should make some progress in my room so I might do that after I write this. My back has not cooperated much in standing so will be interesting to see if moving shit around causes it to flair up some. I got Matt Stell’s song “Everywhere But On” in my head so I got it playing on repeat. It is true as I have moved everywhere but on. I might share it with my therapist. I think she likes country as she was excited Zac Brown Band is playing at Fenway. This is the third or fourth year they have played there. I am not that interested as I think a ballpark should just play baseball. I hate it when they set up the stage and stuff. I just cringe. Maybe it is just me.

I sent a message to a reader because I haven’t heard from her in a while. She is doing okay but is really depressed. She is struggling and I felt her pain. I feel bad that people suffer from pain. It truly sucks when you hurt for more than a few weeks. It is like the pain will never go away. I have been trying to figure out if I will get pain relief when in the hospital for my CRPS pain and no one has been giving me an answer about it. The NP had said that if the pain medication the neurosurg team were giving me was not adequate they would consult the pain team and they are “top notch.” I am just worried they will only treat my post op pain and nothing else. I will be on my back laying flat and my legs will be raised so I am glad because my foot won’t tolerate being flat. It has a difficult time when I lean back and put my legs out. It will flare up in a few minutes but soon as I lean forward again, the pain dissipates a bit. It is still there but I don’t feel it as much.

Today is the anniversary of when I started therapy with the school counselor. I remember it was very difficult to open up about stuff and the voices were making things so damn difficult but I couldn’t tell anyone that. It was my secret and I knew people would not be welcoming with this news. Therapy only lasted until the end of the school year and then I saw a social worker for a year before she left after she got married. The other therapist I fell in love and felt she was just seeing me for my insurance money. Also felt like she took advantage of me because she knew I loved her. She wanted me to go to Northeastern just so I could continue seeing her. I had plans on going to Maine for college. But none of those dreams happened because two months after I graduated high school I ended up in the hospital. So by the time I finished high school, I had three therapists. I would have another 8 before I found the one I had for sixteen years. I would have one more then another a year and half later. I have been with my current therapist for eight months now.

Got a week and a half before surgery. I am so fucking nervous it is not funny. A friend that I saw back in one of my hospitalizations wants to see me as my sister is not going to stay with me. She will be there for moral support. It is up to her if she wants to. I won’t say no. I appreciate it as my nerves will be through the roof.

Wowsers

by Midnight Demon, posted in blogging, cauda equina syndrome, Chronic pain, chronic physical pain, CRPS, depression, mood disorders

Wowsers

Yesterday I was prescribe the bladder medication tolterodine. The pharmacist said to take it at supper time as that would be best so I took it when I got home as it was supper time. I have been feeling dizzy since. I am hoping with continued use the dizziness goes away. I just hope it doesn’t make my constipation worse. But wowsers, is the world spinning on me! I took my blood pressure early this morning and it was low. My pcp had said that after taking all my medications, my blood pressure could drop. Well it did. Whether the low blood pressure and dizziness are related I am not sure. I looked at side effects and apparently, nortriptyline and this med interact with some cardiac side effects. I got to watch that out. My psychopharm doesn’t want me using Zofran too often as it can lead to serotonin syndrome so fuck. All the side effects are similar so I am not sure when what is what. She gave me a list of side effects so if I get them all at once then I know it is the syndrome. I feel so taxed trying to remember everything plus keep track of my bladder and bowel movements. It is stressing me out. I plan on trying to clean my bowels up before surgery so I am not so constipated. My biggest fear though is pooping in the OR while I am under anesthesia.

My mother wanted me to go out today but I told her I wasn’t. I am not feeling up to it after my long day yesterday. I need to rest. I am still not feeling up to par from the side effects of this medication anyway. I feel so drowsy but then I was up almost 20 hours yesterday on 5 hours of sleep. I really didn’t sleep well as I kept waking up to pee. I had to set the med alarm at like 4 this morning because I didn’t want to sleep through with a full bladder. I have it set at five hours intervals, which is roughly the time it takes to cath five times a day. The uro NP wants it less than that but sometimes it is less than that because I could go every three hours or so, especially if I am drinking a lot. She wants me to increase my fluid intake by drinking 16 oz first thing when I wake up. That is half a bottle of Gatorade. I am going to go through a lot of Gatorade so I think I am going to order more next month. Just sucks that I can’t order a large quantity of the same flavor because lemon-lime is my favorite flavor. I get a warning when I am over 10 bottles. I usually order around 25 bottle and then 5-10 of a different flavor to break it up a bit.

From Chronic Pain Info page

by Midnight Demon, posted in Chronic pain, chronic physical pain, CRPS, depression

Got this from Chronic Pain Info on FB. Thought I would share it as I know some of you struggle with chronic pain.

Things to consider if you’re overwhelmed by the thought of being sick or in pain the rest of your life –

  1. You don’t need to live the rest of your life all at once. You only need to survive this minute, this second.
  2. Pain is just one component of your experience. It influences, but does not define who you are, the good you can do for the world, the things you can accomplish, or the joy you can feel.
  3. It’s ok to be scared or angry about the future. Your feelings are never wrong, and there is nothing wrong with you for having them. But you can question the thoughts behind them. Illness is very unpredictable, and things might be better than you expect.

There might be breakthroughs in treatment of your condition. Medicine is moving really fast, and there are even drugs being developed that treat the underlying cause of genetic illnesses, like one approved for cystic fibrosis this year.

There might be a breakthrough in management of your condition. Pain management is a relatively new field, and is quickly improving. Pain, recovery times, and outcomes from things like surgical procedures are getting better quickly.

You might have a personal breakthrough. Maybe you get a new (correct) diagnosis that leads to better treatment, have success with an existing treatment, or identify a trigger for existing problems. Maybe a brace or mobility device you haven’t tried reduces your pain level and gives you new freedom. Maybe it’s a combination of lots of things, each helping a little bit.

  1. Your perspective and ability to handle your illness might change dramatically. When I got sick at 17 I found it intolerable, and dreaded living the rest of my life that way. Today I’m 21 and feel SO differently. I still have pain but I’m happy, I enjoy myself, I love my life. Many things get easier to handle as you mature, and we are resilient creatures. Things won’t always seem this hard.
  2. Try to turn your fear into savoring what you still have in the present moment. If you fear losing the ability to do or enjoy something in the future, trying to really savor it now. Don’t let your fear of losing it in the future keep you from doing it now. Create lots of good memories for later. Focus on your gratitude for still having this thing. Really enjoy all the little details when you’re in the middle of it.

Agony of Despair

by Midnight Demon, posted in blogging, cauda equina syndrome, Chronic pain, CRPS, depression, mood disorders, suicide

Agony of Despair

I had therapy today. I gave her a letter I wrote the other night when I was in a suicidal frame of mind. She said that my treatment is basically in limbo as I am not sure what the recovery is for after my surgery. There may be a way for me to have a telehealth connection but my insurance doesn’t cover it and she has to fight to get it covered. So I maybe without therapy for a few weeks or more depending the outcome of the surgery. She will be able to see me while I am inpatient but I am not anticipating a long hospital stay. Most I will be in for is a week as they like to kick you out soon as you are stitched up. My recovery is going to be at least through the weekend but again, depends on a lot of factors. What I am thinking may not be accurate but I do know I will be there at least through Sunday, if not Monday. I will need home care and/or rehab services as there is no one to care for me at home so my stay may be longer than Monday.

While we were talking she was joking and then I was joking and then she jumped on me to make sure she was saying was understood by me and I just lost it after that. I broke down and I am still reeling from it. Talk about something stupid setting you off. I didn’t allow many tears to fall but I felt like an elephant had jumped on me after the tears stopped. My chest felt so damn heavy. I told her the psychopharm wanted me to think about ECT and she said no one should be bringing up anything to me right now with the surgery that I am facing. She was looking out for my well being and I appreciated that. She is a really good therapist and I am glad to have her in this point in time. I think I will be able to get some work done but it is going to take some time.

Today is the anniversary of when I first attempted suicide. No one knew and I did a bad job of it but I entered the world of self-harm in the process. The goal was to dig into my arm to sever a vein but I never realized how many layers there are to get to that level. The following night was as traumatic as that night and the following day I entered therapy. It took a lot to get me to open up because my father had instilled in me the “what goes on in the house, stays in the house.” I was too suicidal in the week after the attempt. I just started cutting and it was how I expressed my emotions as I didn’t have words for them. I still don’t. That is what went on today. I felt a jumble of shit and just broke down when I was being hammered by questions. My therapist didn’t allow me to jump ship and if I did she lead me back to where I was. I had an anxiety attack that kicked everything off. We were talking about surgery and the next thing I know I am crying. On the way home I wanted to drink so bad. I was thinking about gin and how drunk I would get but those feelings have passed.

I was telling my therapist about how my blog writing has dwindled and writing in general when she picked up the letter I wrote and said no sir. I guess I have to have some kind of person in mind while writing in order to get the words out because once they start flowing, I can go on. She did say that I started to get into something while I wrote but then I stopped midsentence. I had no idea what she was talking about. I kind of just went with it because I do that so often now that I don’t even notice. I just know I feel some strong emotion and I move onto something else. A friend who was reading my blog the other night commented on it. I had to laugh. He said at least I was aware of it. I am aware but after the fact not during. It is really hard for me to sit. Hell even while having severe anxiety in session I was talking about the Sox and anything else to get over the feelings. I know I compartmentalize a lot. It happens with trauma. I told her to expect a lot of talking about the Sox all season. She wasn’t phased only with me coming to see her to talk about the sox. HA. I talked a lot about baseball in my previous therapies and I will be damned not to talk about it in this one as well.

Thing that is bothering me is that she wants me to write out stuff, either blog, journal, letter writing, etc. but I don’t think she gets how damn difficult it is for me. There have been moments where I cannot write what I am feeling because I am too jumbled or I just cannot find my words. It is like they are there but I can’t “see” them. What is worse is that the Invega is taking away my voices so the inner conversations I always have are lost. Granted if I am feeling high emotions, they are there because they always are. They always have been. I don’t want to become psychotic when I am feeling high emotions because that will be bad and potentially dangerous to me. The voices tend to tell me to end my life when medication isn’t holding them back so if I am in a high state of despair, I may act on what they say.

I am glad the drinking urge has passed and I don’t feel like drinking. I have a quarter of a bottle left and I seriously thought I would finish it off. It wouldn’t take much for me to become drunk or buzzed from alcohol because I don’t drink normally. I might have a glass of wine occasionally but that is all I will have. I don’t usually drink to get drunk but tonight I wanted to. Glad there was a line at Walgreens to distract me from these thoughts/feelings.