Category: CES

can’t sleep so I have been up since 0530

by Midnight Demon, posted in blogging, cauda equina syndrome, CES, chronic physical pain, CRPS, depression, disability

Can’t sleep so I am up at 0530

I feel like I have been up every fricken hour after having weird dreams. I gave up at 530 and at 6 had some coffee and a banana bread biscuit from Belvita. Nothing is going on on Twitter so I decided to write.

I honestly think the Flomax I was taking was causing urges to be strong. Since discontinuing it, my urges have been way less than they are and that makes cathing a whole lot easier. I haven’t experienced any bladder spasms so taking the tolterodine was kind of useless.

Yesterday afternoon I had a bowel explosion. Shit was everywhere and I got it on my hands while wiping. It was very soft shit so I couldn’t hold it in. After I cleaned my underwear and the toilet, I took a shower to clean myself to make sure I was clean. I felt so awful after this happened. I hate when it happens. I have no control of my stool once it reaches the rectum and enters my anal canal. I just don’t have the function of holding it in. I have nerve damage to that area. I have been trying to be gentle with myself. I colored a difficult piece of art yesterday after the accident. It took me a couple of hours to sort the colors out. And then it took me a couple of hours to color. It took my mind off my troubles as I was thinking about what color to use next. My finger got pencil coloring on it and I felt like a painter doing work.

Today is supposed to be sunny and hot. I plan on going to the mailbox early to mail my ballot. Every time I get the mail in ballot I have to do it like three times before it is accepted. The first time I didn’t receive the ballot, just the envelope that had to be signed. The second time I received the white envelope and the ballot nothing more. Third time I received the yellow envelope and white envelope with a note saying that my ballot had to be in the yellow envelope and signed. Hopefully this will be the last of it as the election is coming up soon.

I need to shave my head and face today. I have stubble that is turning into a beard. I have finally mastered the goatee so I need to shave around it. I want to use the electric shaver but I need the mirror and I don’t know where it is at the moment. I like that I can shave in my bed. I can’t do my head with the shaver because it has hair dust that stays and I will have to wash my head afterwards. Besides, I get a closer shave with a razor than the shaver. I might use my five blade razor today. Just hope I don’t nick myself with it like I have in the past.

I bought some new books that I want to read about medicine history and the enslaved people it experimented on. The book got delivered but I don’t remember where I put it. I think it is in the unopened Amazon box. Maybe I will read today rather than doom scroll on Twitter. It has been a while since I read a book. I am still working on the MLB book. It is a big book with over 500 pages. I have learned a lot but I don’t think I can write the book I want to using this book as a guide. It doesn’t give me the right information I am looking for. I don’t know where I can find it. Seems teams names changed every year before 1901 as owners changed hands. Some teams were dropped off because they didn’t collect enough tickets to be worthy of playing so their players were switched to other teams that did collect enough tickets. It was kind of confusing at first but I think I got it after I read a little more. I have a reading challenge going on like I do every year. My goal for this year is to read at least 12 books. I tried to do the 20 books but always came up short. I figured 12 would be one book a month but I haven’t finished any book since Trauma and Recovery by Judith Herman. I have read 6 books so far so I only have 6 books left. Should be easy if I get off Twitter enough. I am a quarter way through the MLB book. I also bought Jim Acosta’s book, Enemy of the People. I can’t wait to start that one.

I wrote to my psychiatrist to tell him how awful I feel about my bowel and bladder issues and how I don’t think my therapist is going to be validating me on them. I feel so alone about it. Since stopping the medication, I have to keep myself on a schedule or otherwise I will forget to pee because I don’t have the urge. Also right now having a full bladder causes me abdominal pain because of the hysterectomy. I still have the stitches in me. I tried taking it off but it wouldn’t come off so I just left it. I am entering my third week post op. I don’t know when the stitches will fall off. I need to ask the nurse that when I talk to her hopefully tomorrow.

I bought some marigold seeds that I want to plant. I had bought some soil and terracotta pots for a seedling my cousin gave me but my sister was able to plant it in her pot so my pots have been sitting on the porch all this time. I might give it a go sometime this week. Marigolds are my favorite type of flower.

Love Story vs Don’t You

by Midnight Demon, posted in blogging, cauda equina syndrome, CES, chronic physical pain, COVID19, CRPS, depression, mood disorders, painsomnia

Love story vs don’t you

As you may know by now, I am a huge Taylor Swift fan. Her latest album, Fearless (Taylor’s version) has been playing since I have been able to download it to my phone. There are two songs I absolutely love. One is Love Story and the other is Don’t You. I am having a hard time deciding which to put on repeat because I want them both on my top 25 playlist. Right now the numbers are below 50 for Love Story and over 50 for Don’t You. (The numbers are how many times it has been played as recorded by my MP3 app.) I have been thinking of making a playlist with just those two songs so that I can listen to them back to back. I might just do that. Don’t You has been really talking to me, but not in a psychotic way. I just can really relate to this song so much. Taylor’s new music has been really good and there have been songs I can finally relate to. I feel like that her new music has been grown up as she is older now. My other dilemma with her music is that I follow her lyric bots for the album folklore and when a lyric plays and I don’t know the song, I want to listen to the album to know what the song is. It is driving me crazy not knowing.

It is almost 2am. I woke up an hour ago because of pain. And I had to pee as it has been six hours. I was able to void without cathing so I am happy about that. I am not happy I have a uti. My culture came back positive for bacteria. I haven’t heard from the NP yet if she is going to treat it or not. I have been feeling yucky the past two weeks since the cramping started. I have had busy back to back days and am really tired but cannot seem to sleep. I want to change my sheets but it will be a hassle as I have stuff on my bed again. I got Amazon packages surrounding my bed. I just have to take two downstairs to put on my porch. It is my new coffee that I love from Starbucks called Spring Day. It is limited so I bought a bunch while I had the money.

I was able to wake up early this morning to get my first vaccine shot. It took less than twenty minutes and I was early. I had to stay a little longer than the usual 15 minute observation period because I had an anaphylaxis reaction to ginger. Ginger is not in the vaccine but they wanted to be cautious because I had this reaction. The only reaction I am having right now is a sore arm and a headache which Tylenol helped very much. I had to ask my doctor if taking Tylenol on a daily basis is good. He said as long as I don’t go over the 2000 mg dose a day I am ok.

High levels of pain and new development

by Midnight Demon, posted in blogging, cauda equina syndrome, CES, Chronic pain, chronic physical pain, CRPS, depression, disability, medical, mental disorders, mental illness, mood disorders, physical pain, psychache, transgender

My pain level for most of the day has been a 14 since 4 am when I woke up to pee. Ankle/foot have been either together or alternating with the pain. Either my ankle joint is being hacked with an axe, foot bones are being crushed, or now an “L” shaped pain has started which totally prevents me from moving the damn thing. I just want to die and I am racking my brain on how to do it seeing as how I was going to do it didn’t pan out and didn’t work.

Today I found that I have diminished feeling in my privates. I can get slightly aroused but either have a weak orgasm or none at all, which is frustrating. I know I don’t talk about sex that much on here but the disc that is doing whatever to my bladder nerves also controls the nerves to the other parts of my genitalia. Although I wish to have no relationship with it, I have no choice because nerve damage will make phalloplasty difficult so I’ve choose not to have bottom surgery. However, now that this stupid disc is wreaking havoc on these nerves, I might as well not have a sex life of masturbation or with someone of my choosing. Thanks Cauda Equina Syndrome for really fucking up my life, and not in a good way.

As the compression seems to be causing slow diminished effects it is hard to know what level this injury is coming from. It is making me so damn suicidal. But like I said I need to find a way to do it. I still have the ginger plan. It is just finding the ginger to do the trick. I am going to try ginger beer next. Or a ginger shot that I found on Amazon. Sent a pic to my therapist and she got upset with me. Oh well.

I emailed my psych to let her know what was going on. She wants to know what my neurosurgeon says. I am thinking I probably will have to get a new MRI with contrast. I am going to suggest that an IV be placed so access is there. Otherwise, because I am a hard stick, it might be difficult to administer the contrast. My only worry right now is what effect this is going to have on my bowels. Right now I am backed up so I am kind of grateful for that but I need dynamite to get the shit out. OT has suggested Miralax so I am trying that. I am also wondering if the back pain is being masked because of the pain meds I take. Today while looking for a book my back flared up but sort of settled down. Then I was standing doing something when pain said to sit. I’ve been sitting with pain since then but it isn’t above a 4. If it was higher, then surgery would be next on my mind.

I really like my therapist (ptx) even though she is a hard ass. She pushes me and I like that about her. Also, I really didn’t think I had bullshit but she says I do. She wants to keep me on track of what we talk about and stay on it, not derail because I am feeling emotions about it. I am driving her nuts with the text thing. So I’ve decided to send the worrisome stuff to my alt phone so it is out of my system/head.

I can’t really the last time I had a number 2. I was going good for a while now I’ve stopped again. I hate constipation. You might think this is gross or maybe something not to talk about but this is what I deal with and shit I deal with goes on my blog. You don’t like it, find something else to read. I am scared of this development. The whole purpose of not going through phalloplasty was cause I liked my clit a lot. If it is no longer going to work then I am not sure what I am going to do. A sex life isn’t important to me but I’d still like one if it should present itself. If I should find a female I like and we hit it off i don’t want it to end because i can’t function. I never dreamed of having someone long term in my life but i do want someone to cuddle with.

If you are reading this and it cause discomfort due to issues of sexual abuse or something, please let me know and I will place a trigger warning so someone else doesn’t.

Trans issues 27.7.19

by Midnight Demon, posted in Bipolar Disorder, blogging, cauda equina syndrome, CES, Chronic pain, chronic physical pain, CRPS, depression, disability, grief, mental illness, mood disorders, painsomnia, physical pain, transgender

I can’t wait for top surgery. Things on chest are giving me such a hard time. I feel so ugly and humiliated. This isn’t me when I see them.

Kind of worried with the CRPS on left side. That is the side my left ankle is affected. The way they described how they cut the nerve to the nipple makes me nervous. I could lose feeling but that isn’t a major concern for me. I just want the fucking things off!! The right one might be more of a problem as it is bigger. Swear I have an orange on left and a small watermelon on right. And fuckers are heavy. But it might be that I just hate them so damn much. Worst part is they have become hairy which really bothers me. Becoming a man is so hard. Makes you feel really fucked because you aren’t congruent with how you feel.

The major thing is getting these things off. I would tomorrow if I could but I am being “selfish” waiting for the damn construction of the house to start and finish. I thought it would at least be started but it hasn’t. I haven’t asked my sister for fear of another argument. Been doing small stuff in my room as it is all I can handle.

Yesterday just putting groceries away flared my back up. It really scared me as I couldn’t touch my back without it hurting. I haven’t had that bad of pain since getting cauda equina syndrome x2. I have no red flag symptoms but I didn’t last time. I lost function of my bladder today. Things with it have been messed up since the middle of May. I moved to sit up and reached for my laptop which wasn’t too far from my grasp when urine squirted out. Luckily it wasn’t too much, but freaked me out. That was how I got CES (cauda equina syndrome) the second time. I had severe back pain and then started leaking more than I usually do. The disc was a different level than the first. And according to the surgeon it was huge. He had no idea how I was still walking. Been having intrusive memories most of the night and right now as I am describing it. I’ve never really talked about how I felt about it. I knew what I had and just focused on getting better, making sure I didn’t do what I did the first time, which was basically not having a clue what to do or who to see. I didn’t go to Spaulding, which is a huge rehab hospital because I’ve dealt with their lab and just thought all the people there didn’t know what they were doing. I was wrong and I am glad I was as i got a terrific PT now for my CRPS (complex regional pain syndrome) stuff.

I hope doing all the things I’ve been doing doesn’t cause me to blow a disc that is already herniated. I have herniated discs from levels L2-S1, worse at L5-S1 and again at L2-3 where I had CES x2. My first diagnosis was at level L4-L5. I fear if I have surgery again, I might need a fusion and I’ve heard bad stories about them. No one I know has found relief from them. And the stuff I read was fusions were only to be done on the neck, not the lower vertebrae. That is why I never want to have it done. I’d rather be in pain, but if other stuff is going on like loss of bowel/bladder, weakness in lower extremity, numbness from anywhere waist down (including saddle area and sex organs), then I will consider it. But only if I have a capable surgeon one who has done them a lot of times and have had success with them. I don’t want a neurosurgeon who only does the brain or pituitary gland. The whole thing scares me.

When I was able to see my therapist again (the 16yr one), she kept on telling me I went through a trauma. I stay away from that fucking word so much. I denied it tooth and nail until I started having PTSD symptoms. To this day I cannot go near the 3rd floor of the hospital where I worked. That is where the operating rooms were. I always wanted to see them but not as a patient!

I sent my psych an email about the top surgery and how I felt about it. She will sign me off on it but I really want to have a discussion with her before she does, just to make sure I am ready and she knows I am ready. It is a huge deal and I’ve gone back and forth with it in my mind. From i am attached and what will it mean to not have them there to seeing a man’s chest and saying I want that. I want to be flat and not have these things. I tell you, when they started developing, it threw me for a fucking loop. I thought getting my menses was bad. Nope. Having things grow was not what I wanted. Then to have a mother molest you because of “concern” more than once because one was bigger than the other and sending me to see a cosmetic surgeon when I was 13, fucked with me so fucking bad. I was so embarrassed this male doctor was talking to my mother about it but it would be when I was older. I nearly wanted to fucking die on the spot. I didn’t want them to be the same, I wanted them fucking gone!! I had already started hating my mother since I was 10. This just added to it more. Makes me feel so ashamed I have them and aside from cutting them off, there is nothing else I can do. Makes me feel really depressed, like I am in this pit I can never get out of.

But none of this matters if my CRPS pain isn’t controlled better. I have a date planned to end it. I am trying so hard not to think about it as I want to see my psych again. At the same time, while the cat’s away, the mice will play keeps running through my mind.