transition appt and other things

Transition appt and other things

I’ve had an early day as I woke up around 5. I decided to stay up as I needed to get up at 7 to shower and get ready to leave the house the latest at 815. I played with my phone, talking to a fellow tweety buddy about stuff. I had woken up with spaghetti arms and she never heard of the term. I explained that it was a side effect of my antipsychotic medication. It doesn’t happen often but it does happen now and then. Around 6 I decided to heat up a burrito and then shower. For some reason, my heating method didn’t work as well as before as parts of the burrito were cold. I might have to use the second side at 40 seconds rather than 30. I had a glass of juice and then hit the shower.

By the time I was done, I was wiped out. I had about 45 minutes before I had to get dressed so I decided to risk laying down. I set my alarm and when it went off, I didn’t want to get up. I laid in bed for another ten minutes before getting dressed and leaving the house. It was sunny out and a little chilly but it would warm up a little by the time I got home. I just caught the bus to the station. While I was on my way, my friend texted me saying that she couldn’t meet me because something came up. She felt bad as she was looking forward to seeing me. I told her not to worry. I will be having frequent trips to the health center so there will be other opportunities.

The appt went well. I asked him what to do with the one female hormone I am taking to stop my periods. He said once I start testosterone, I can switch to a progesterone only pill until the T builds up in my system to adequately stop my menses. I might have a period or two while adjusting. He needs to talk to my psychiatrist and therapist and then I think by next appt, I could be ready to go for T shots. It will be weekly and could take as long as 6 months to show changes because of my age. I asked about top surgery and he said that can be discussed once I have begun changing. He asked if I wanted bottom surgery and I said no due to my nerve injury. I still don’t know how T is going to affect my sex drive or how it is going to be. I am kind of worried because when I was sexually active (some 15+ yrs ago), after my nerve injury it was very painful and I hated it. Since I have been out of that crummy relationship, I have not been with anyone. It’s so damn hard because even my urine is fucked up some days. Like the other day it was like all I did was pee. Then the next day, I hardly peed at all, no matter how much I drank. It’s so frustrating.

With the length of this transition, I am kind of thinking of how my plan is going to be and what to do about it. I haven’t put anything in motion, mostly because I haven’t been up during business hours to place phone calls. I emailed my psychiatrist in a kind of panic email about all of this as I was in a pain flare and basically going nuts like I do. I just get so overwhelmed with anxiety during a flare, like the world is ending kind of feeling. I also become more suicidal as I want to escape the pain. I don’t want to live anymore if I am supposed to spend the rest of my life in horrific pain every single day. I don’t know if it will be worthwhile going through the transition or to start it. I don’t know what to do. I keep thinking it will pass and I can manage the pain again, but then there are days where I am set in my ways and I want to go through with it. I still have time as it will take some time to organize things. I have no deep rush. I do know it will be sometime this year. I just don’t know when, specifically.

bus hopping

Bus hopping

I woke up around 0840 with my bladder close to bursting. I quickly took my meds and “ran” to the bathroom. I went back to my room to sleep for about an hour or so. I didn’t drink anything other than the sip or two of Powerade I had with my meds. My bladder was close to bursting again and it hurt so bad after I emptied it. I was like WTF. I know between my meds and stupid nerve injury, my bladder is fucked but fairly functional. I was so annoyed. I wanted to make breakfast burritos but was getting antsy. I was hungry so I had the one that was in the freezer with the picante sauce. I then took the longer way to the square, which required two buses. I went to Starbucks and had my espresso and wrote a little in my journal. It was fricken cold today but again I was wearing a heavy sweatshirt so I was roasting. I couldn’t write anymore so decided to use the bathroom (bladder was full yet again!) and then leave to go into town.

Caught the train and picked up my scripts. The “storm” is now slated for the evening/night. I could have rested today but whatever. I came back to the Square and just missed the bus so I caught a bus to the other bus location to the bus home. For what should have taken me 2 hours, took me three because I had to catch four buses. I was freezing and by the time I reached my house, my ankle was talking to me. I really needed some pain meds. I wore sweatpants that I swear just make you sweat. No breathable material.

I went up to my room and changed then got under the covers. I played on my phone until dinner was almost ready. My mother was making a turkey tenderloin. It was okay. I would have like breadcrumbs over BBQ sauce. My ankle was screaming by the end of the meal. I wanted to go back to my room but my fricken mother told me to put the veggies away as her back was hurting. Pissed me the fuck off.

Then I find out the “storm” is only going to be about six fricken inches at the most, which is NOTHING! And now it looks definitely like evening/night so I wasted a day, hurting my fricken ankle for an errand I could have done tomorrow. I am so pissed. The way this “storm” is moving, it probably will go out to sea by tomorrow and we won’t get jack. Fricken weather people just love to hype shit up!! I am so fricken sick of this. I heard one weatherman say last storm that it was going to be heavy snow turning to snow! What the hell does that even mean??!! Isn’t SNOW SNOW???? Unbelievable!

I need Pearl Jam but I got a fricken migraine so country music it is. I don’t know why every fricken time I turn on the radio app, I listen to commercials. EVERY SINGLE TIME! My sister called to tell me I need to make sure my niece is out of the house by 750. Yuck. I need to get her up at 730. I set my alarm after the call so I wouldn’t forget. I guess I will have an early start to making my burritos tomorrow. I am going to make them with two cheeses, cheddar and American. I should buy Monterey Jack as that is creamier than cheddar. Also melts better. Think I will put it on my growing grocery list. I think I am up to $175 in groceries, but a few items are meat so that is why it is so expensive. I want to get ribs again and some hot dogs. I found out they have a 16 count of my favorite brand that is a few dollars more than an 8 count. Score. I am also getting some eggs because I know we will be out by then, even though I just bought three dozen. I need at least a half dozen to make my burritos. I think that will be at least 3-4 burritos. They kept nice in the freezer and warmed up good, too, for my first trial. So it is worth it to make it in batches.

Rare disease awareness week–Cauda Equina Syndrome

Rare disease awareness week

This week is rare disease awareness week and I thought I would write about one of my rare conditions called cauda equina syndrome. The syndrome is comprised of different symptoms when taken together requires urgent attention. At the end of the spinal cord, there are a bundle of nerves that resemble a horse’s tail, thus the name cauda equina. When these nerves are injured or compressed due to disc material or other trauma, they can cause serious damage. For those having back pain, it is important to know what the red flags are so that emergency surgery can happen to prevent further nerve damage that could become permanent.

They are:
• Loss of sensation of one or both legs
• Loss of sensation to the genital area or saddle area (basically between your thighs)
• Incontinence of bladder and/or bowels
• Retention of urine
• Weakness or numbness in one or both legs
• Severe back pain

Not everyone will experience all of these or might have some. It is important to get an MRI when you have a few or all of these. Don’t think that just because you don’t have all, you don’t have cauda equina syndrome. I only had severe back pain and weakness and numbness in my leg when I was diagnosed. Some docs think that you need to have bowel or bladder involvement to have this condition. THIS IS NOT TRUE!! The quicker you have the MRI and surgery, the better your chances for recovery. You have about a 48 hour window to avoid permanent nerve damage. It is important that you have a competent surgeon, someone who does spines. I prefer a neurosurgeon over an orthopedic surgeon because the neurosurgeon will have a greater knowledge of the nerves. That isn’t to say an ortho can’t be just as good. If the ortho only does spinal surgery, you might be okay. Just be sure they are board certified. You can check that out by checking on this website
This is only in the U.S.

If you have been diagnosed with cauda equina syndrome, you may have a lot of questions about recovery. It is a multidisciplinary approach, from physical therapists, occupational therapists, urologists, neurologists, etc. It is important to know you are not alone and there are support groups out there. I have had this condition twice, which is rare. I had it at two different levels. Everyone that I have met with this syndrome does not have the exact symptoms or damage following surgery, even if the level was the same. It take a long time to heal from nerve compression. Don’t give up hope. Regeneration is a time consuming process, but with the right amount of physical therapy and home exercises, you can recover in time. It took me two years before I was able to get off my medications until I was hit with it again three years later. It took longer for me to recover but I knew what to expect because I had the support group behind me. No one is a cauda equina syndrome expert, not even the best doctors. Little research is done in this area. There are stem cell research going on for those that have paralysis and that gives us the hope that some day our nerves can be helped.

Check out my pages about cauda equina syndrome if you like to help you learn more about it.

four hour test and a flare up

Four hour test and a flare up

I didn’t sleep very well last night. My alarm went off after I finally settled down. Think I might have gotten an hour and half. I took a shower and then it was time to get ready to catch the bus that never came. I had to take a different bus that went farther than the Square. Once I got off that bus, I ordered my Starbucks as I waited for another bus to take me to the Square. I quickly had my breakfast and took the espresso with me as I was now running late. I hoped there was no delays on the train and there wasn’t. I made it with 10 minutes to spare.

The first part of the scan was to inject me with the radioactive stuff and then take like 4 minutes of scans. Then I had to wait 2 hours to finish the rest of it. I was hurting for the positioning of my foot but it wasn’t too bad. I went to the café and met up with a friend of mine. We talked until he had to leave. I also went to see my former coworkers in the lab. There were only a few people I recognized and talked to. Everyone else was new.

While in the café, I got a cup of tea and then wrote in my journal. I was so tired and wanted to sleep but I just couldn’t nap. I went back to radiology a few minutes before I was supposed to and waited in the waiting room. They called me back and we went to a different room. It was cold and my foot immediately didn’t like it. It was the same positions as before but for about 10 minutes or so per scan. One of the scans, the tech put a rubber band on my feet. It irritated my foot. By the time we were done, I was flared up. I wish I could have had a ride home. The tech said results would be available this afternoon but I haven’t received notification of them yet.

I slowly walked to the train station. By the time I got there, my ankle was really hurting and my foot felt like ice. I took a strong pain pill that I had with me. The train was there when I got to the platform but it was delayed. We sat for a bit. I didn’t care as long as I didn’t miss the bus home, which would come in about 40 minutes, or so I thought. As I reached the Square, I got a text saying the bus was having moderate delays. Great. By this time, my foot bones were killing me and I just wanted to crash. Finally the bus came. I went to Walgreens to buy something for my mother and then came home. My ankle bone hurt. I was in so much damn pain I knew I wasn’t going to sleep. I was hungry but all that I wanted was my mother’s brownies.

I had two brownies and then went upstairs to change into my PJs and thermal socks. While taking off the sock on my bad foot, it flared up more. I was in pure agony. Half my ankle and foot were in 12/10 pain. I took my regular pain meds. Then after a couple hours, I took another strong pain pill and Ativan as I was getting anxious from the pain. I still haven’t heard anything about my scan. It could take up to 24 hours for radiology results to be put online. I care but don’t at this point as I just want to see my pillow.

The insurance card I was waiting for came in the mail today so I can change my name at the hospital I have my care. YAHOO! I’ll go to registration tomorrow after my psych appt, I might go before hand depending on what time they open. I just checked my prescription card and the updated name has happened. YAY! Progress. Now I just need to update it at the pharmacy. I hope I don’t need all new prescriptions in my new name. That will suck. Only thing I need next week will be my Ativan, and by then, my license will be changed to my new name. It won’t be a laminated card as I will have a temporary one. I just hope the gender marker doesn’t cause a hubbub. I really don’t want hassles.

OK, Pain is at a new level. Didn’t think that would be possible. I need to lie down. Until tomorrow!

random 15112017

Random 15112017

Today was my sister’s birthday, which concludes birthday month for my father’s side of the family. There are more birthdays on my mother’s side than I know what to do with. November, I guess, was the month to be born. I didn’t want to go downstairs as I felt crummy and I was in pain. I didn’t go to sleep until after 0230 and pretty much slept all day.

Tomorrow I go for my bone scan. I hope they find something that leads to some treatment to decrease my pain. I’ve had enough of dealing with it. I will be at the hospital most of the morning and part of the afternoon as it is a 5 hour long test. I hope it is shorter than that but who knows. I won’t know until I am there.

I wanted to go to the grocery store but it was late when I got up and I didn’t feel like showering or going out. Tomorrow is going to rain. I just feel so fatigued. I barely have energy to write this. I just want to go to bed and never wake up again.

I got the song “one number away” going round and round in my head. So I have it on repeat now to drown out the noise. I hate it when a song is on repeat in my head.