Tag: cauda equina syndrome

Public transportation disability services and stuff

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

Public transportation disability services and stuff

I had my interview with disability services to get a Ride to where I need to go for medical appointments and other things as long as they were T accessible. I think I got approved as the guy said I should hear back within two to three days. I am hoping two because the third day I will be in surgery. I was wicked beat after the appointment but I had to go to Walgreens for my mother and get some more Gatorade to last me until Thurs. I worked out a system with my bag with my former coworkers as I will need my phone charger more than anything else. I don’t think I will have anything by mouth the first day as I will be flat on my back the first 24 hours. Hospital is in shut down mode so my outpatient appointments have become either phone or video appointments. I spent most of the time this morning getting phone calls about this. I did call my neurosurgeon’s NP and surgery is scheduled. I am to report at the times they gave me. Just thinking about this has given me such anxiety. I spent most of the night prepping my bag with stuff I want to take with me. The last thing I needed was Gatorade. I think I have everything but the meds that they may not have in formulary.

After the trip with Walgreens I started wheezing. I know it is because I am tired and it was cold out as I was rushing to get back home. I just wanted to be in my room under the covers. I gave up keeping the window open. It got too cold in my room. I would have to close it anyway in a few days so just as well. One less thing to worry about. I talked with my ex-supervisor at work and he is lending me my old locker to store my stuff in it so I have a place to put it. This way I don’t have to worry about my family bringing me stuff when my coworkers are already there. Please give a shout out to the medical pathology departments in your hospital because they are working just as hard as the doctors and nurses to give results that are needed for this crisis.

I hate having to cath. I honestly hope it is better after surgery because I cannot live like this anymore. It is just too fucking hard. The flashbacks of trauma don’t help. One day I will write about the stuff I went through with a parent but not right now. I can’t get myself worked up with all this stupid fucking anxiety around surgery. It will just throw gas into the fire when I am trying to burn the fire out. Allergies have been bad the past few days and it isn’t officially spring yet till Thurs. That is probably why I was wheezing. Allergies. I just took Flonase so hope that calms it down some. I will take Benadryl if I need to. I might anyways to calm the fuck down. I had minimal sleep last night because I was crazy with anxiety. My phone kept ringing or I had to make calls this morning and I don’t even remember who I talked to because I was on the phone, writing emails, getting shit done all before I had a cuppa. I didn’t want cawfee and now I won’t be able to have it because I don’t have half and half. I have to go to the super market and get it tomorrow. I want to get Golden Oreos, too. And this stupid cereal I fell in love with but can’t seem to find anywhere but in the damn stores. It’s a flax seed and multigrain flakes cereal that is made by Nature’s Path. So good. That is all I want. Then next week or whenever I am home from the hospital, I can order my regular grocery stuff.

anxiety is building

by Midnight Demon, posted in blogging, Chronic pain, CRPS, depression, mood disorders

Anxiety is building

There are just four days until I have surgery. I have made lists of things and plan on filling my med box before I go in as I want to have them filled when I come home as I don’t know what state I will be in. still planning on locking away meds as needed. I just got to find or remember where I put the med box. I still don’t know if I will be seeing my therapist this week. Everything seems to be on hold. I don’t know if I will see my psychopharm either. I haven’t heard anything from her office but I am guessing it is the same. If I have a virtual appointment with one, I am going to cancel the other. I don’t want to expose myself while traveling into Boston.

I just lounged around my room today. I showered and then did my meds so I could take them. I made something to eat, boiled eggs and that was all I had to eat today. I just am not very hungry. I got a phone call from the ride saying they will pick me up around noon so I will have to be ready by then. I have no papers to bring with me. I just have my PCP’s card and I think that is all I will need. I tried getting the fax number from my therapist but she might not be in the office. I just have the cell phone number and hope it will be enough if they need to speak to her. I probably will need to fill out a consent form when I am back in the office.

I got word from my urologist that I don’t have an infection and she wants to have an e-visit with me. I never had one so I told her to tell me what to do. I was expecting to hear back today but doesn’t look like it now. Maybe tomorrow.

Saturday Blog 14032020

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

Saturday Blog 14032020

I did a lot this morning when I woke up. I finally made the breakfast burritos and then because I still had energy and wasn’t hurting too much, I baked cookies. I paid for it afterwards though. I couldn’t finish washing the dishes. I did what was there and then I had to stop. My foot was a blaze in pain. I had some giambotta my mother made. It had all vegetables in it, carrots, zucchini, onion, and potatoes. Giambotta is basically a mesh of stuff put together. It was good but she put crushed red pepper in it and for some reason that triggers a migraine for me. It is the second time this has happened. I went up to my room after all the cookies were stored, with a note that said warning eating more than 3 will give you the shits. The cookies have a lot of fiber in them which makes you go to the bathroom. Why I made them. I am trying to have them stay a little longer as I know my sister and nephew like to eat my food. My nephew has been eating my tortilla wraps when I asked him not to. I was only able to make 8 burritos when I wanted to make 12. That is because a package of tortillas only has 8 in it. I don’t know what he uses them for but fuck. I pay for them not him.

I sent my therapist a pic of the burritos. I was going to send one of the cookies but decided not to. I won’t be able to share with her anyways because I may not see her. I still have no word on anything. My uro hasn’t been in touch with me over my results of the urine culture so not sure if she is going to treat it or not. I just sent her a message so maybe I will hear from her by Monday. I feel like I do have a UTI so I hope she does treat it. Would hate to have bugs in my urine pre-op. but time is getting close to how long I should be treated for. At this rate, just three days is what I can expect.

I think I packed everything I need. I just need to find a micro USB cord. I thought I had it in my bag but it was just another Type C wire. The micro USB that I have been using is 10 feet. I hate to bring that in the hospital but will if need be. I got a 6 ft wire for Type C, which is for my phone. I will bring both and see what happens.

I slept most of the afternoon to take away the migraine and the exhaustion of cooking and baking. My foot acted up a little bit but not overpoweringly. Sleep definitely helped. Now I am wondering if I will be up all night. I was late in taking my night meds. Took them an hour and half late because I was sleeping. I shut the alarm off and went back to sleep. Bladder woke me up. I don’t remember the last time I peed so it had to be a while. I hate that I have to keep track of this now. Bowels I always kept track of now the bladder too. It is just too much. I have to cath at least 5 times a day. Today every time I went, I cathed. I think I just voided once on my own, only because the urge was strong but it took a while to get going. I hate that. I hate that I am still retaining despite being on medication for retention. But I guess if I wasn’t on the meds, I probably wouldn’t be going period. I found that out when I was in the hospital and they didn’t have my medicine I take. I plan on taking the meds with me. Speaking of which, I might as well put them in my bag after I do my meds for the week. I will make them full so when I am home, I don’t have to make them up again. I can just bring them downstairs. I do have to lock away my meds so no one gets into it. I just rather put them locked away than be sorry.

Preparing for surgery

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

Preparing for surgery

Because of the mayhem Coronavirus is causing, I may not see my therapist next week in her office because of trying to limit people’s exposure coming to the hospital. She may work from home which means we will be talking via Skype or something similar to it. She wanted me to come up with things that could help me reduce my anxiety about my surgery. She said to make lists so I started that. I plan on baking and making my burritos this weekend. I think my sister is going to be making chili so I am not sure how much kitchen time I will have. My nephew has been eating my tortillas so now I just have one package left of them to make my burritos. I asked him twice already not to eat them and it was ignored so I really need to make them soon or I may not have tortillas and I can’t buy more as I have no more money until after my surgery, which is when I get paid next.

I had a major flare last night and I didn’t get to sleep until after 1 am. I then woke up around 7 so I took my meds and put my phone in silent mode so I wouldn’t get disturbed. I took a bunch of my night meds this morning to try and deal with the flare so I slept most of the day, which is what I needed. Now I am kind of awake and it sucks because I can’t get back to sleep. I am too nervous about things so decided to write to see if this would calm me down some.

I sent a message to my therapist about the letters and asked her what I was going to do about them. She said to email them to her and I am not sure if she meant via the patient web thing or actual email. I am hoping my surgery doesn’t get rescheduled because I am already going out of my tree as it is. I am not sure if I will be seeing my psychopharm next week which will suck because I need my Ativan refilled. I plan on locking my meds up before surgery so that no one can get to my meds. I will place them in the locked box that I have. It is bigger than the med lock box I got.

I wanted to get my haircut but my barber has been exposed to the virus so I can’t see him right now, not this close to surgery anyways. All the urine tests that I had done this past week have been sort of negative. I have a few bugs in my urine but nothing to indicate that I have infection. I still have not heard from the doctor yet though to confirm I am okay. I don’t know if she wants to treat it or what. I got word from the catheter supply company where I have been trying to get samples that the representative today got the verbal order that I do indeed cath. This representative has been emailing me the past two weeks trying to get the order through. Nice to know that there is some stop gaps before proceeding to verify my information.

Monday I got the appointment with the public transportation Ride service. I just hope I appear to be more disabled than I am so I can get their services on days it will be too tough to take the T, especially with my upcoming surgery. I have no idea what kind of restrictions will be made. I just know I will have to make sure there is money in my account every month do have this service. It costs like 4 bucks each way so 8 bucks total for the round trip ride. It will be nice to get a ride to the library every so often so I can not be hassled with the T buses. It would take me four buses to get there because I cannot walk up the street to where the library is. The one that is in the Square is close for renovations. I am not sure if it has reopened as I haven’t been down that street since the bridge closed. The book that I took out is due next week but because the city is in shutdown mode due to the coronavirus, I had to renew the date so I don’t get charged late fees. I don’t know when I will be able to return it. I am hoping maybe my niece can do it after school as the high school is right there when things are open again. Probably when the virus is gone but who knows when that will be.