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.

My choices are becoming clearer

My choices are becoming clearer

I thought my PCP was understanding in how I was using my medication. He was taking notes on how I was using it and I thought he was okay with it. As what I am using right now is not the count that can last me the 28 days, I am frequently running low on meds by the time of my next refill. I sent him an email saying that I would like a count increase and that is when he says he can’t do it. Fucker! I feel so damn upset that yet another doc is refusing to help me with my pain. It is making suicide a lot easier to pull off.

I was really cold, again, today. I took a nap after made some breakfast/lunch. I had made coffee but it didn’t help to warm me or keep me awake. I was again up in the middle of the night and had shit sleep. I woke up feeling really hot and sweaty. I was having a dream about some female actresses that was just weird. I woke up and my foot and ankle were throbbing. I missed my dose because I was sleeping. I took a pill when I got up. Now I am cold again.

I’m going back to bed soon. I am going to find my will tomorrow and make some changes. I am also going to leave a note for my family saying that they should consider suing my PCP’s office for their neglect of my pain. I hate to bring the law into this but malpractice is malpractice. I am not getting the level of care that I need and am just being blown off.

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.

Sunday Blog 3 Dec 2017

Sunday Blog 3 Dec 2017

My Buckeyes won the Big 10 Championship last night. It was a nail biter in the 4th quarter. But an interception won the game! I was very happy. Unfortunately, my pain over rid my joy and I was up all night again. I didn’t go to sleep till around 5ish. I was kind of waiting to see if there would be news of the Football playoffs but it was too late. It would be announced today. I was not happy when I woke up because Alabama got OSU’s spot, all because the Bucks lost to an unranked team earlier in the season. The Bucks will play in the Cotton Bowl Dec 29th against USC Trojans. One of my CES friends is a Trojan fan so it will be interesting. I have been fuming most of the day over the committee’s choice of excluding the Bucks for a championship game. They deserved to be in the playoffs and I hate that one loss determined their fate. It was like the rest of their wins, including the Big 10 Championship, didn’t count. I am so mad.

My brother in law did not put in my ceiling fan like he said he would do. He decided to get a Christmas tree and go food shopping instead. So I guess me roasting and possibly getting a heat stroke are my choices. I am not going to risk an electrical fire by turning it on until it dies. I can’t stand the noise it makes either. And even though I found the right temp for the thermostat, my mother has turned up the fucking heat. I am now roasting. I wish I had heard the heat turn on before I went downstairs. My ankle flared up when I took off my slippers as I undressed to take a shower. The pain settled down but now is back up. I am so fucking mad. Now I am boiling mad because even though I found the right setting on the thermostat, my mother jacked up the heat. My room is so fucking hot right now and it’s not that cold out. Fucking bitch already pissed me off once today. She called me “miss” and then my birth name. I walked away like I didn’t hear her. My cousin has also been calling me my birth name even though I told him my name is G. Dumbbell also calls me GiGi, like WTF? What am I, a toy?? Pisses me off.

I know I am angry because of being in pain and I want to end my life. I am tired of this shit. I am tired of the sleepless nights. And now I am in pain, again. I joined the BPD chat. That was good. Now a damn social worker in one of the Carolinas thinks she can tell me what kind of therapist I need. PPPFFFTTT. Talking to the wrong person, lady. Then she tells me she wishes me well in healing. WTF is healing when you want to end your life every single fucking day?? Fucking please. Go find someone else to spew your good tidings and insight. I don’t need it.

I managed to go downstairs to adjust the heat, even though my ankle didn’t like it. My mother wanted me to do something but called me my birth name, again. I went back upstairs. Fuck her. Then she screams that she has been calling me my birth name for 40 years blah blah blah. I have kept quiet about it but today it is like pouring salt into a wound for some reason. I am just so mad. I think me not sleeping the past two nights have got me on edge.

I have therapy tomorrow and because it is past the 24 hour rule, I need to go. I am going to ask him about his mommy and daddy issues that he brought up the last time we met. Like to see what his answer will be. I don’t know if I will get anywhere with this guy. I’ve seen him since April and I don’t think he has been too helpful to me. I’ve had 2 hospitalizations and working on a third, possibly. I still don’t think we connect in any way but just tolerate each other. Just basically called him because he was the last name on my list and I said okay let me try him. I am glad he didn’t turn me away because of my suicidality and he doesn’t flip out when I talk about suicide, but on the other fronts, can you give me some guidance??? Like seriously, aren’t you supposed to help me?? Or did I get therapy all wrong all these years? My psychiatrist who I see every two weeks for about 20-30 mins gives me more validation than he has all fricken year. Though if I text him, he is more supportive than in session!! I don’t get it. I really don’t. I just go with it then write a bitch blog about him.

I had left my MP3 app on on my phone. I wasn’t using it but the thing doesn’t shut off when not in use. It was taking up memory and clogging up my phone. I turned it off and then for kicks, checked the phone’s RAM. It has more than my new laptop! No wonder it runs so damn slow!!! I definitely need to get more. I was planning to anyways as it was cheaper to buy it as is and then upgrade here and there. I just got to look at the manual and see how to do it.

I took my meds about 45 mins ago and now I am feeling sleepy. I will stop here. Later my readers!