day of surgery

Day of surgery

I woke up an hour before my alarm. I plan on staying up. How I want a cup of coffee right now or tea. I just took my meds with the bare minimum of water. It was so gross taking them with water, especially this early in the morning. I can’t drink water and now I am a little nauseous. Hope it goes away. I got to brush my teeth. I was going to shower and I might. Just not right now. I am wicked nervous about this and my right arm is half a asleep. I hate when I sleep on it. I got an empty eyeglass case so that nothing happens to my glasses.

I got to get ready now. I just wanted to write a quick note that I may not be writing for a while. I am not sure when I will write next but I will when I am up to it and I will bitch about every second of it so expect swear words.

Saturday Blog 07052020

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.

depression and delusions

Been reading my blogs from a year ago and found that I was very depressed. I didn’t want to be in treatment. I didn’t want to take my medication anymore. I just wanted to be left alone. I felt like I was a bother to my psychiatrist and my therapist. Then things got more serious. I was in pain and that just sent me over the edge. I became suicidal. Now there was no way I couldn’t see my pdoc or therapist. They wanted to see me despite me telling me them it was a waste of their time. I must have read at least three blogs that said this.

It was after my book was published and I sunk into a deep depression. I don’t remember it now. I just have the blogs to monitor these things. I am glad I have this record because I don’t remember half of what I write. Some blogs were written in the evening. Some were after midnight. The ones written after midnight were more depressing than those written at an earlier time. But then, my moods always get worse after midnight, especially if I can’t sleep. I talk about Hyde in a few of the blogs but not all the time. Hyde is my suicidal alter that comes out when there is a perfect storm: I am in severe pain, deeply depressed, and want to end my life. He likes to write the most morose things. He will write suicide notes. He hasn’t been around much since July. I hope that he stays away.

There was another blog that I read that was “private” I had to throw it away because it was a description of me trying to end my life. I couldn’t justify keeping it so I “threw” it away.

I am in a lot of pain right now and I just realized I forgot to refill my bottle of pain meds that I keep by the bed side. I will have to get up and do so. My ankle is not going to like it but it needs to be done. Because if the pain gets worse and I have to walk the three feet to the bureau, that will be worse. I hate being in pain at night. It is awful. But hopefully my meds will kick in soon and I will fall asleep. I doubt that it will be soon. Foot is also acting up along with my ankle. It’s the trouble twos. I usually can’t rest when both my foot and ankle are flared up. I didn’t do anything. I think it is nerve pain because my toes are throbbing big time.

I read a lot of my blogs tonight. I didn’t notice any patterns or anything in my mood for the months I was depressed. And when I was depressed, the world stopped spinning. It was horrible to read the pain I was in and I don’t mean the physical pain. The mental pain of depression was awful. I don’t know how I got through those episodes without trying to kill myself. According to the blogs, I had extra sessions with my therapist. That must have been what got me through. I wrote that I fired her a few times in addition to cancelling my sessions that she refused to do. In one blog, I wrote that I had pain and she un-cancelled the session. I had to see her. All because my ankle was hurting me. She is a weirdo, but she is my weirdo.

I feel depressed right now because of my pain and that I can’t sleep. It’s after midnight. I feel like I should write. Writing tends to make me sleepy so I can actually sleep, even if it’s for a few hours. I am sure to wake up anywhere between 0400 and 0700 today.

As I have been writing about my second diagnosis of Cauda Equina Syndrome, I have another story to regale. One night the nurse practitioner decided to give me a high dose of Neurontin with my other meds that I was taking. Mind you, I was still recovering from surgery so I still had some anesthesia in my system and I was on some powerful pain meds at the time. She gave me the Neurontin to try and ease the “nerve” pain I was having in my thigh that was weak. I have been on Neurontin before so didn’t think nothing of it. Until I started having delusions. I imagined I was in my bed at home and when the tubes fell into the nursing stations, I thought my mother had fallen out of bed. I couldn’t get up to see her but when I woke up from the noise, I realized I was in the hospital and went back to sleep. Soon after the nurse came in to wake me up as I had to go for an MRI to find out what was causing the weakness in my leg. She was to give me valium so I could be relaxed during the MRI and a pain med so I would be comfortable on my back for the hour. She didn’t know my mental status was impaired until I told her I had to call my mother and find out if she was okay. At 0230 in the morning, I called home to see if my mother was indeed ok. She was and told me to worry about myself. I realized I was dreaming and the nurses went on their way but I still wasn’t myself. The orderly wheeled me to the emergency department imaging center and I had a flashback of when I was first diagnosed with CES. I was stuck in this time. I had no idea what was going on. But I was too drugged to do anything about it. By the time they had me on the table for the MRI, I passed out. When I came to, two nurses were trying to catheterize me because I hadn’t gone to the bathroom in hours and my bladder was very full. They asked me if I knew where I was and I told them I was in the ER (I was actually back up in my room but it was still the middle of the night) and that I had CES again. I then passed out but not before hearing them say something like “he’s gone”. When I finally came to the next day, the nurse practitioner came into my room to talk to me. She said that I had a bad reaction to the Neurontin. I just looked at her and said, that wasn’t a dream? She told me no. I was floored. She was going to put me on another medication and that is when I stopped her. I told her to run it by my psychiatrist first before putting me on any more meds. My psychiatrist must have scolded her because she came back and said she wasn’t going to put me on anything else but to make me comfortable. Results of the MRI showed that I had a fragment on my L3 nerve root and would need surgery again. Oh fun! It would be my second in three days time.

Post CES (Cauda Equina Syndrome)

These are a few suggestion for those suffering from Cauda Equina Syndrome, post op and are recovering from cauda equina syndrome.

  1. Scotch tape on feet can help with nerve pain. For some reason it can block the signals and the vibration type of feelings.
  2. Don’t expect doctors, nurses, or any other health care professional or specialist to know about CES. They just have a vague clue or the textbook version and will not be really helpful in dealing with your suffering. Find someone who is!!
  3. Muscles spasms can be helped with magnesium supplements containing magnesium hydroxypatite, citrate, and oxide. Vitamin Shoppe (www.witaminshoppe.com) sells this version as magnesium complex for women but men can take it as well. Be careful though as too much mag can cause diarrhea.
    1. Quinine (hyland leg cramps, also found at vitamin shoppe) is useful as well as the other drugs your doc might provide. Drinking Tonic Water also can help.
  4. For bowels, senna is good. Taking too much can cause cramping as I found out much to my chargrin. This is available in multiple forms, from pills to tea.
    1. Miralax is also good as it loosens up stuff. Only downside I found when taking it daily is that is can cause watery stools. Some people have found this helpful, others not.
    2. Although the docs might prescribe fiber, it might back fire as it can cause gas with friends. Use with caution. If you are the health conscious type, veggies and bulk foods will work.
    3. Carrot juice as also been helpful for some people with constipation
  5. If you have numb feet, be careful/mindful of walking outside during hot weather as it is very easy to get burns on hot surfaces such as decks and patios. Checking the areas for blisters, scratches, or cuts is also a good habit to get into after walking on the sand on beaches to make sure you didn’t injure yourself. Consequences can be severe infection to ulcers that don’t heal.
  6. For foot or any ulcers that don’t heal, try Manuka honey. It is popular in the UK (United Kingdom) as the treatment for ulcers or wounds that do not heal to traditional treatment.
  7. Foot/leg/ankle nerve pain is common. It is characterized by burning, stabbing, shocks, jabbing, jolting pain that wakes you or prevents you from a sound sleep. Medication for this is trial and error as not everyone reacts the same. Common drugs used to treat this are:

                                                               i.      Gabapentin (neurontin), lyrica (pregablin), lamictal (lamotrigrine)

                                                             ii.      Tegretol (carbamazapine), zonagran (zonisamide), Trileptal (oxcarbazapine)

                                                            iii.      Trycyclic antidepressants such as amitryptaline, nortriptaline

                                                           iv.      Cymbalta (duloxetine)

  1. Bladder problems. Self catherization is common. Having a “bathroom bag” is important for outings and to store trips. These include a change of clothes, underwear, diapers, or other essentials to toilet care, including baby wipes (non alcohol preferred). Use of purell or other antiseptic lotions in the bags can help decrease UTI’s (urinary tract infections)
  2. Bowel problems can be reduced based on diet and a routine. Some people have found it helpful to set a day a side to use as a “bathroom day”, others use the remedies above to make sure they go, though if continent, diapers are available and can be purchased discreetly through the internet, if you are shy like me in purchasing them through Walgreens or CVS. Use of wipes are helpful as not everyone can feel they have gotten everything and helps prevent skid marks.
  3. The embarrassment of an accident cannot be underestimated. It is a loss of dignity that hurts like hell. Write to the group about it helps. Don’t keep it inside. You are not alone with this!!!
  4. Use of any omega 3, flax seed oil, evening primrose oil (for women, helps with menstruation) and other anti oxidants can help decrease inflammation. Found in various health food stores. Does take a while to build up so please be patient!
  5. Alpha liniolec acid (ALA, though not to be confused with the omega 3) can help. Some people take 600-1200 mgs. This can cause your urine to smell like asparagus but increasing water intake helps. These are found in various health food stores. Like for use of the above, does take a while to work. Please be patient!
  6. Yes it is possible to have kids after CES with the right care and that the baby and mother is ok physically. Always consult with a doctor about this, though we provide opinions we are not health care professionals.
  7. Check vitamin D level. Even if ok, should supplement. Vitamin D deficiency has been associated with chronic pain as well as other chronic immune disorders/diseases. Since I have been replenished, I have not had a bout of bronchitis/pneumonia. It takes a while, especially if you are low (<20) to build up your levels, even with prescription strength D. Supplements should be 1000 IUs or higher and taken every day until level is between 40-70 then taken every other day to avoid toxicity (>100 but this happens if taking a LOT of d (>10,000 IU/per day over a period of time). Just my opinion!!!! Most doctors do not know the full benefit of being D deficient versus non-deficient . Research this if you like but it helps to be a normal level than not in the long run!!!
  8. Get support through www.caudaequina.org. It helps knowing you are not alone.