Dreams

I woke up out of a surreal dream this morning and started bawling my eyes out.

The flip flop of mental Euphoria and optimism to absolute dread, sadness, and feeling utterly alone has now invaded my dreams. Not only did I experience "Neurological" dreams last night, the flip flop made it so real. It is not a normal thing to wake up confused, crying and suicidal.

 

Sick?

5 days till surgery!

This is day 20 something of being at 7mg prednisone. I intend to stay at 7mg instead of stepping down about now, because it is so hard on my body to do so and Surgery in 5 days... If I get side effects from surgery I want to use process of elimination with limited variables. I won't be able to tell what is what as far as side effects if I am feeling crummy from another prednisone step down.

Oh.... guess who has refrained from getting sick (common viruses haha) for almost a year? Yep. This girl. 

UNTIL NOW! I had two doctors appointments yesterday and I woke up this morning with a sore throat and headache and my head was really dizzy. It must be a cold type thing... ironic that yesterday I had to stop taking over-the-counter meds for surgery BUT I have decided to take my vitamin D vitamin C and Echinacea to try to kick this thing out of my system ASAP. The pre-op nurses were more concerned with over-the-counter meds like aspirin or ibuprofen which thins my blood so I think I'm pretty safe with just vitamins. 

Getting things in order for Surgery

Day 21 at 7mg pred

Feeling Nauseous.. have a bad headache. Might be having an allergic reaction. (we drove to Cali yesterday and got some dried okra chips from a Ikedas) 

Trying to get surgery stuff in order. 11 days.

Pain clinic Wed at 9:40

Pre op stuff Wed at 2:00

Surgery April 4th. at 1:30

Still in a lot of pain. Just trying to deal 😞

Power of Scent

Day 17

Having a bad day. Every little part of me hurts and feels equally weak at the same time. My right leg feels longer when I walk, my limbs feel wrong.

Appointment with my OBGYN Dr. Chacon to set up my hysterectomy surgery stuff is on Wednesday at 2:40. 

I want to note: I was feeling very depressed and defeated by all of this pain and weirdness. I put some yummy smelling lemon verbena wax cubes in my Scentsy thing and the smell changed my mood. The fact that smells are that powerful over our outlook on life is pretty amazing.

Last Period

Day 15 of 7mg prednisone.

I am in the middle of having my period... my LAST Period EVER! The menstrual process totally wreaks havoc on my MS. Looking forward to hysterectomy on April 3rd.

I bought a motorized recliner and lift chair that will be helpful for my surgeries, just waiting for it to get delivered.

Pain is still extreme, I have been taking marijuana chocolate everyday now it helps a lot.

Day 9

Day 9

At 7mg of prednisone from 10mg.

Pain is the word of the day. Everything aches to my core. Today is by far the worst day.

For the past week I've been taking my pain meds as well as eating squares of medical marijuana chocolate, today I don't have any more chocolate and I can feel how much it was really helping me. 

I have been trying to distract my brain today away from the pain. I keep finding myself holding my breath because it hurts so much. It's a beautiful Sunday outside. It's crazy how beautiful things can be irritating when you feel so awful

 Inside and out. I want to be able to do the things I want to do.. seasons go by months go by, but I am still stuck in this bed.

Actually I would love to just be able to walk without pain right now.☹️

Day 5

Day 5 

At 7mg of prednisone from 10mg. I really feel weird. ☹️️

I had an okay day, lots of pain and I am getting bouts of nausea, hot flashes but I am trying to find things to focus on to distract my mind. My mom took me to get blood drawn to check my levels, and to go to a pain clinic appointment to pick up my script for oxycodone, oxycontin? It's one of those. 

It was nice to spend time with my mom. ...

This weirdness came on suddenly. I was sitting in bed watching a show and my body suddenly felt very heavy, like gravity quadrupled. Even holding my head up was hard. Things became distorted, I had to pee and Poor J had to help me hobble to the bathroom because my legs were so wobbly. 

My body has serious Lag. Messages from my brain are not getting to where they need to go very quickly.

Right now, my body is feeling very strange. Hot pain shoots through my arms from my neck to my fingertips. My legs do not feel like they are a part of me (disassociation). My left leg is trying to "lift" or "curl" while the muscles cramp up.

Day 1

Day 1 on 7mg.

It has been 25 days since my last step down to 10mg from 15mg of prednisone. My pain has plateau'd so today I step down to 7mg from 10 mg. (Joy).

Having a lot of arm pain this morning, and feeling of not being left or right handed. Also have the left side of me wanting to "lift" or "curl".

Subsequently I find myself holding my breath because of pain. 

Depression

Feeling low.

Depression sucks. I take medication for depression, I have been taking it for 17 years but it really does not seem to be working. Also I'm addicted to one of the medications (Effexor XR) and am taking the maximum legal dose of that.... I already discussed that with my psychiatrist. I think she is intimidated with all my health issues and all the medications that I take to try to even squeeze a new medication in there or take one out. She treads lightly, has lots of sympathy and she really listens to me. Every time I see her I have another horrible life crisis, they just keep coming one after another the past two years. I can tell she doesn't quite know what to say or what not to say like I'm some fragile flower.

The craziness of finding out I had  MS, and finding out I am BRCA1 positive and what that means for me, being let down by doctors constantly, it makes me feel so defeated. What is the point. If this is as good as it gets, I need to be put down, it is the compassionate thing to do, enough suffering.

 This is my low. These are the thoughts that I can't shake out of my mind.

I logically know that things will get better in some aspects. Prednisones step down has been hell on my body and my mind and eventually I will be off of it. I know that is a temporary thing and I know that it's messing with hormones and my brain. 

I will note on my disappointing neurologist appointment later.

Icky

Bizarre day today.

I woke up after having strange "neurological dreams". Vivid dreams where I feel very dissassociative and it feels like my limbs are being pulled apart in all directions. I was also having what I describe as adrenaline restarts in my dreams this time. I have been experiencing them during the day, but this is the first time at night. 

Tried cooking eggs this morning, 

I spaced out and the oil popped scared me I tripped over myself backwards. I binge watched a show on Netflix today I was feeling crappy and disassociative from my own body. It's a weird feeling, not pleasant.

4:30 rolls around I am still in bed watching a show and my pain level is very high and I feel a twinge of withdrawals. I checked my meds and sure enough I never even took my morning medication. Ugh.... kicking myself.

I am a space case.

I have an appointment tomorrow with Dr. Kreiss my neurologist got me in last minute at 1 o'clock. I'm trying to get prepared with questions, not feeling very good right now I might just do that in the morning.