Missed a dose

Fake it till you make it.

Two big cups of coffee in the morning and I fought off any lingering fatigue. I was so busy with my sort of "job" without pay (helping the animals in my community) that I accidentally skipped my afternoon meds. Bad nono. Twitching, stuttering, unable to to focus. Fatigue fell over me hard.

What is reality?

Frustrated.

The coming of fall and the change in the weather is reminding me there are things I needed to do. Some things I only half retain the information, some I am not sure if I dreamed it or if it was real information. Too many upsetting feelings. Grinding my teeth a lot.

I am angry that I do not remember what is real and what is not. I am panicked about what other things I could be forgetting that are important, my stomach is in knots. I am overwhelmed when I think of possible ways to stay organized. This turns to fatigue so strong I feel like I have been jogging for 8 hours straight. Its a stupid cycle of uncertainty. I struggle to feel productive.

Been a While

It has been over four months since I added an entry.

A lot has happened in four months. I do not know how many times I have started writing and gave up before posting. Making a promise to myself to post this whether it is finished or not. 

It was a combination of things which resulted in temporarily abandoning my Multiple Sclerosis entries. Menopause was a big one, the ups and downs were enough to live it once let alone stop to record it. Losing my best friend is another. My babygirl Luna lost her battle on May 2nd. She was my love, my heart, my training partner. A chunk of me was lost that day. It has been painful to talk about.

Another reason for not writing..

I was sick of being sick. MS, depression, menopause. I did not want to think about it if I did not have to. In other words I tried to ignore it. I would pretend that I wasn't sick. To write it was to relive it. I spent a lot of time with my mom, I felt like I could not trust myself to not act on harmful thoughts. My mom has really helped me throughout these past few months.

I want to begin writing again... it was very helpful to keep symptoms and doctor appointments documented. I still flip flop between caring about everything and wanting to dive into things.. and disconnecting myself from everyone and everything writing included. 

Feeling very Low. Hormones and more Drugs.

24 days post op Hysterectomy

My frame of mind has been bad. My mom helped me to get into needed doctors sooner as this awful depression has led me into serious suicidal thoughts. I asked my peers who have gone through a hysterectomy if their life had no meaning.. many have experienced what I am going through and suggested antidepressants and anxiety meds. Unfortunately I was already taking a heavy dose of antidepressants and anxiety meds prior to my hysterectomy.

Yesterday I had doc appts

I saw my psychiatrist on emergency visit. I had my mom come with me this time because I really wanted to convey how I feel as I feel this is serious and I need help. I know I am already taking the maximum dosage on Effexor XR and I'm taking the maximum dosage of clonazepam. My psychiatrist is very sweet but she approaches me with caution as I don't think she has many patients like me who have so many things going on, and so many medications to take into consideration before adjusting meds. 

She asked me if I wanted to be hospitalized, but I gave her a definite no. Hospitals make everything worse.  Yes, unfortunately I am alone most of the time because James works so much, and being alone leaves me time to think which is scary. My mind goes places that It normally would not go. I think of the knives in the kitchen maybe driving off of a cliff, those intrusive suicidal thoughts are always in the back of my mind and it's not good to dwell.

Since Effexor is out and the other meds she mentioned make me extremely sick, she upped the dosage on my carbamazepine. Instead of just taking one in the morning I will take one in the morning and also to in the evening. I have another appointment with her in one week if I'm feeling fantastic I will cancel the appointment if I'm not feeling any better I will go back.

I also saw my OB/GYN yesterday finally.

He only spent about 30 seconds with me unfortunately. Explaining my serious menopausal symptoms he said estradiol pills would be the best thing to do. He could try for the patches but likely my insurance will deny it and I would be waiting longer and longer to get hormones. Also on the downside he said the hormones will not work for 4 to 6 weeks. Ugh. He also mentioned that this will be very very hard. Thanks.

I mentioned the dangers of putting a young person into surgical menopause but basically he shook his head said it wasn't true patted me on the back and was really trying to get out of the room quickly before I asked anything else. 

Fucking doctors. At least this guy was better than the last one. Honestly that's really sad. It makes me sad for all who have Medicaid and can't find a Doctor Who cares even an inkling about your well-being.

At least I can always count on my primary care doctor. He's very intelligent and nonjudgmental and is a real person who cares about what's going on with you and takes initiative to solve the problem right then and there, no cutting corners. He spends plenty of time with me . I will mention the many issues with surgical menopause in young women to him, i'm sure he can guide me to do what's best.

I have about had it with my goddamn neurologist I see him next week. Third time seeing him. I swear if he STILL has not acquired my proper information so he can assess the situation I'm going to blow up all over his office. I believe there is now a total of three neurologists who take Medicaid in my area. The neurologist I have is one of them.

Really hope I start feeling better with hormones and upped dosage of carbamazepine.

Not Good

20 days post op Hysterectomy

I am definitely in need of hormones.  See my OBGYN on Thursday. The brief highs are nice, but things are mostly very very low. I have been very depressed and have neglected writing. Anxiety and pit of the stomach dread is always there. It is even in my dreams. This is the same torment I had as a teenager, a familiar awful feeling. I narrowly escaped teenagerdom with my life. I cannot handle going through that again. With MS symptoms always wearing me down both forces are too powerful. 

I have been wearing a sports bra at night, that and the hydro cortisone cleared up my boob rash.

I need to get things in order for doctor appointments. Pain and Brain on Wednesday. OBGYN on Thursday. Pick up Lunas meds.

I need to research a bit more the types of hormones available, I am ready for them to hook up a damn IV get it in my system so I can feel better. Fucker should have been a bit more informative on surgical menopause. There I go again, mood swings from the depths of hell. 

No censor

April 22nd

April 22nd

Having a shit ton of MS related pain today. I woke up at 3:30 and couldn't go back to sleep hot flashes all night. Rash under boobs because of sweating all night. Put hydrocortisone cream and a dab of monistat to ease rash pain.

April 19th 15 days post op

15 days post-op for Hysterectomy due to BRCA1+ 

(Hot flashes are NO JOKE) #previvor 👍

On the positive side, pain from the Hysterectomy has gotten better! I can tell I am healing...

On the negative side... well....

I am a 33 year old woman thrown into surgical menopause. Body isn't happy.

I have had bad hot flashes day and night for about a week now. I can almost handle that without much complain.

But Yesterday I felt like the world was ending, bawling my eyes out for no reason. I could not get comfortable, I could not concentrate, nothing I did was satisfying. Hit me out of nowhere like a ton of bricks.  A familiar feeling that I would get right before I started my period (I would always remind myself even though it feels like all is wrong in my world, it is just PMS and will be over soon)

But this time it will not be over soon. This I cannot handle on my own. I had an appt. With my OBGYN today but had to cancel and rescheduled for next week. NEED HORMONES! Unfortunately it's not something they can just call up to the pharmacy either.

Fortunately my MS has behaved for the most part up until a few days ago. Since my pms symptoms have seriously increased, feels like MS is retaliating against the traumatic change. That has it's own long list of symptoms.

Blah... I'm just a whine bag mess

April 11th 7 day post op

7 days post-op for Hysterectomy due to BRCA1+ (Ovaries, Cervix, Uterus, everything)

I had my surgery through the DaVinci Robot. Two small incisions and through the Belly Button. I have Multiple Sclerosis and had no idea how my body would react to having severe trauma (surgery).

Right now: 

Feels like extreme cramps.. Lying back in a recliner is the only thing that helps. Bleeding off and on, the more I fidget in this chair the more I bleed.

Very sore inside the incision sites, feels like a huge internal bruise. I am able to walk very slowly to the bathroom and back to the recliner that I have been calling home since the hospital released me. Anything more than this and I start feeling really nauseous.

Something new as of yesterday: muscles are spasming uncontrollably and painfully in ripples throughout my abdomen. (A familiar spasming associated with my Multiple Sclerosis) also associated with MS.. I have had a lot of bloating from surgery and it causes me to feel extremely disassociated with my body. I don't feel like my bloated stomach is my own. A very odd and mind screwing feeling.

Every time I pee it hurts inside! I imagine because the bladder shares a wall with the uterus that they removed. Inflating and deflating my bladder is a painful irritant.

I am having more hot flashes but extra mood swings are yet to be determined: pain is my world right now.

Binge watching Netflix. Put my brain on autopilot to get through the days.

Taking benedryl for itchy incisions, healing I presume.

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.

New spay date!

So... I have a new spay date!

After firing my last OBGYN, I found a new OBGYN that I really like both as a person and as a medical doctor. I have a new Hysterectomy Surgery date for April 3rd. This will include ovaries, tubes, cervix and uterus. The BRCA gene that I have has a correlation with uterine cancer, and my cervix already has abnormal cells on it. 

My new OBGYN explained that it would be in my best interest to remove it all, (Through my own research I felt this to be the best option) best to remove all that is in question, instead of leaving bits and finding cancer later.

 I fired my last OBGYN as he did not want to do the correct surgery for me. He wanted to leave the Uterus and Cervix, even with abnormal possible precancerous cells growing on it. Thank goodness I do my own research instead of trusting the word of a doctor. I mentioned my former OBGYN to my new one, and what his intentions were. My new OBGYN more or less said its a no-brainer to remove it all given test results.

YaY! 

One more period and I am DONE!

Day 19

Day 19 on stepping down from 15 mg to 10 mg of Prednisone.

Yesterday and today have not been as bad pain wise! I still have a lot of pain, but I am noticing a difference. I am hoping my adrenal glands have kicked in, I think I felt better after about 22 days after step down last time.

It sucks that I just have to suck it up and live with withdrawals, but I am determined to get off of prednisone! I am doing all I can to ease the withdrawal symptoms. I will likely step down on prednisone again in a day or two and will be going down to 7.5 mg.

I want to be excited about my next step down but every time I step down its like knowingly putting yourself into an MS flare. ☹️️