another shitty day

Another shitty day

I tried to make it to my appointment for urodynamics today but my body was like, that is a no. I got the runs when I reached the bus stop. I came home just in time. How I didn’t crap myself I have no idea but I am taking it as a blessing. I canceled the appointment because it was too late to go back to the bus stop. Plus I wasn’t feeling so hot. I felt weak like I did a month a go when I had the infection I wasn’t aware of. I just tried to go back to sleep but I got hungry and made myself something to eat. I didn’t like the coffee today. It wasn’t sweet enough. I drank half a cup and then tossed the rest of it down the drain. I feel bad that I had to cancel but if I had gotten the ride like I was supposed to it would be a different matter. I couldn’t get a ride because they would pick me up after the appointment and that wouldn’t be good. So I canceled the ride and appointment. I had no choice. I will just make it on another day.

My psych emailed me this morning and I responded saying that I wish I could just say the hell with the steroids, order the MRI and do the surgery but I can’t. If the steroids don’t work, then I will have to go to plan b which is what I just said. There is no other plan. I have six days on the steroids and then we’ll see how I feel. I hope that I will be feeling better. I haven’t done my PT exercises because I walked to the bus stop and back. I did a 1000 steps. PT should be happy with that.

I asked my sister to take me to the library so I could return this book I have had out since Feb. It was due in March but because of Covid, they kept putting the date back. It is due next week so I had to return it. The library still isn’t open. I wanted to see if I could get the YA book that I am starting. I have the first book on kindle. I would like to get the other 2 books in the series but they are too much for me right now. I have been seeing good reviews on Twitter from readers I know. I am always interested in a good book.

I have been listening to Hamilton the past few weeks. I just love this musical. I am glad I gave it a second chance and downloaded Disney Plus so I could watch it. I like to put a name with a face. And I love Phillipa Soo. She is brilliant and so beautiful.

shitty day for therapy

Shitty day for therapy

I had PT this morning. I also had a psychotherapy webinar but it was an hour and a half and that would cut into my PT time so I didn’t go to it. I had PT and my PT gave me a new scale called the Yucko meter. It ranges from 1-10 and you base it on how yucky you feel. I was a 4 by the end of session and had to lay down but I had therapy so I couldn’t. My therapist decided to reschedule the time because I felt shitty about 15 minutes into session. I liked that she cared enough to reschedule because I was feeling so crappy but at the same time I felt terrible that it had to happen. I rescheduled for Thurs. I have PT that day but the time for therapy is a few hours later so I can rest. I do have to have 400 steps every day in between sessions. I got more than half that right now.

I goofed with my pain meds. I was supposed to call in a refill for my pain meds last week but I totally forgot and now I don’t have meds. I put the request in last night so I should hear back sometime today. It is raining heavily right now and supposed to be storms all afternoon. I feel it in my ankle so I won’t get my prescription today if it gets called in. I will pick it up tomorrow. It is supposed to be hot and muggy all week. I hate it already. Least the rain is cooling things off a little bit right now. I have been running my AC all weekend. I will have to give it a break soon so it doesn’t frost up.

Tomorrow morning I see my neurologist via virtual visit. Then I have my psychopharm visit. I have to tell my psychopharm that I stopped taking the duloxetine because of stomach upset. The reflux was too much for me to handle. It was especially bad at night. I haven’t been eating much the past few days because I have no appetite. Yesterday I just had Ensure and a bowl of cereal. Today I ate a little better. I had a piece of chicken cutlet and some French toast. I got the hungry horrors today probably because I had gaba last night. My ankle pain was out of control last night. It took all that I had to control it. In the end I took Benadryl to sleep as it was after midnight.

I layed down after therapy was over. I didn’t sleep, I just laid there listening to classical music. I still feel shitty. My head feels so fuzzy. I am definitely a 7 on the yucko meter. I should be laying down and resting but I don’t feel like it. I am so aggravated that this is beyond my control and that I have to literally do nothing but rest in order to feel better. I wanted to get my haircut this week but that doesn’t seem likely. I have too many appointments this week. I wanted to go Wed but I don’t think I can because I have testing done in the morning. Urology finally called me and set up urodynamic testing. I have that Wed morning. I am back to being busy with doctor appointments. My psych wants a zoom meeting but she hasn’t responded yet with a time and date. I half want to message her and say can it be next week as I am so booked up. I am tired just looking at my schedule. I don’t have to leave the house for any of the appointments but still, the mental energy I have to put in them is tiring.

I was able to brush my teeth today. I used my electric toothbrush, which dropped toothpaste on my shirt. I had to change shirts. I still need to wash my face. I am mustering up the energy for that. My back has already started to act up on me. I don’t know if I can stand that long to wash. I got a huge headache still so I really don’t think it is going to happen. Maybe this evening.

I got to lay down again so I will stop here. I wish I didn’t feel so shitty.

Sunday Blog 12072020

Sunday Blog 12072020

I changed my sheets today and it wiped me out so bad. I am so tired. I need to shower but that isn’t a priority. It still is really humid in the house as temps are in the upper 80s. I haven’t done anything but the sheets. Now I can go to sleep.

I am glad I did this. I have been meaning to do it for weeks and I just cleared off my bed and did it. I hope I can keep my bed clear but I don’t have high hopes for that. I can never seem to keep my bed clear no matter how hard I try. One thing accumulates and then it is cluttered again.

Tomorrow I have PT and therapy back to back. I will need to be in my kitchen for PT and in my room for therapy. The PT wants me to do it in the kitchen so I have the counter to hold on to if I need it. I am not sure what she is going to do now that my symptoms of CSF leak are surfacing. I will find out tomorrow. I wrote down some stuff I want to work on in therapy. That was my homework assignment. I think she will be pleased with it. There is just a few things I want to work on. One is breathing. I need to control my breaths as I breathe too fast at times. I don’t know how to control it. I never tried. But I am willing to learn. The other thing is to try and cut out the thoughts to planning when I get suicidal. I hope that she is willing to work with me on these goals.

I took a quick shower. I didn’t have to sit down more than once. I am doing better than I thought I would. I still feel lightheaded. I think I am probably going to have to go back on steroids. I rather that than some other procedure. I hope the surgeon sees it that way. I really don’t want to go through another MRI.

Saturday Blog 11072020

Saturday Blog 11072020

I did my walk today by going to the pharmacy. I did better than I thought I would do as I wasn’t huffing and puffing as much. I also am not as fatigued today. The last few days have been rough. I collapsed in PT on Thursday. I just became overwhelmed with symptoms of CSF leak. I got very weak very quickly. I had to lay down the rest of the session and then I still had to lay down when I got home. I slept the whole afternoon and evening. I just had a roast beef sandwich and that was it. I didn’t want anything else. Yesterday I was still fatigued and called my surgeon to let him know. I see him on Tues as we set up an appointment with him. I am kind of nervous. I just hope I don’t need an MRI. I don’t think I can deal with it again.

I need a shower but it is too hot in the house. I would melt after coming out of it. I will wait until tomorrow and try then. I have found using the cool vent helps. I just don’t think it would work today as it is so humid in the house.

I am really upset that I can’t do what I used to do anymore. This leak is causing me to decondition and just when I think I am up to par, I get knocked down. I hate that I have to lay down when I get like this. I can’t stand laying in bed all the time. It messes me up. I try not to sleep but being fatigued doesn’t help keeping me awake. I just feel all fuzzy and headachy. The only thing I can do is lay down. It helps take away the fuzzy stuff but not the headache. I have been getting dizzy with it too so I really need to keep my fluids up and stay hydrated.

I have my AC on and think I need a new one as the MED setting doesn’t work. Hi and low does but not med. It is an old AC I have had it for more than 10 years. It has filled its duty. I think getting a new on would help the electric bill some. I also want one where I can access it on my phone so when I am coming home, I can turn it on and cool the room off some. Those kind of ACs are not cheap to buy. There was a model I was looking at on Amazon but the price kept changing so I did away with it. I couldn’t afford it. I should have gotten it when the price was lower.