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. ☹️️

Angry

I am so sick of Neurologists in Reno bailing on me! I mean seriousfuckingly? I (had) an appointment on Tuesday and have been waiting four months to get in.

They called left a message that he won't be there Tuesday and soonest is now May 3rd. That is ANOTHER 3 months. Also had the receptionist treat me like utter shit, asking me if I need a lecture about answering my phone because they should not have to leave messages. Really?! I have issues, I miss calls! I am human!

What makes people think that it is okay to treat others like shit? It baffles my mind. It is not okay. Thanks receptionist lady, you have efficiently ruined my morning. I am so pissed that I am crying. Not to mention I STILL have not gotten neurological help it's been a year. I have had to treat myself, be my own doctor, at least I have my primary care doctor to try to help me treat my multiple sclerosis. I cannot get a goddamned neurologist to help me. Fuck. Ugh. I am disgusted with people.

More Adrenal Support

Bad pain today...

I upped Adrenal Support to 3 times a day. Turmeric Curcumin is twice a day. Zofran, dramamine, marijuana have helped with the nausea. I took an extra Lyrica today, pain was so bad.

If I seem okay, I will put Lyrica for three times a day instead of two like my primary care instructed.

Have heat on my legs right now, they really ache. Still having my period so nothing surprises me. Just took my last percocet of the day. 

Pain... too much Gravity

Ugh..

That is the word of the day. It is sleeting slushing snowing outside, I just started my period today which means nothing wants to work in my body. I will be so glad when I don't have periods anymore hopefully that will be very very soon.

SUPER BAD PAIN! I have taken my morning meds which includes a Percocet and I just ate two squares of medical chocolate and 3 ibuprofens for cramps.

Gravity doubled overnight. I stumbled over my lead legs this morning. This is day 8 on 10mg Prednisone.

The positive for today is my moms surgery went extremely well and she was just released from the hospital this morning and is on her way home 👍❤️ I hope James gets a day off this weekend so I can go see her and Jake and Kris.

Upped Lyrica, Moms Surgery

Sixth day on 10mg prednisone.

I have been having hot flashes and nausea today. Battling it with zofran, dramamine and marijuana.

 Pain is still here. Thank goodness for percocet to take off the edge. More Lyrica arrived today! My upped dosage of Lyrica was accepted by Pfizer. If I up my Lyrica right now I will have to keep good track of any symptoms because I am already having weirdness with my prednisones step downs. I want to be able to differentiate.

My mom has surgery tomorrow. Her second mastectomy and reconstruction. I will have to go through that as well after my hysterectomy.  

Day Four. Withdrawals

Fourth day on 10 mg prednisone.

Mornings and evenings have been better than my afternoons. Thankfully while at my pain clinic appt she upped my Percocet to 3 times a day at least for right now. And I have definitely needed it.

 My doctor said I should not feel the withdrawal feelings like I did from the last step down given that I had a cortisol shot.  Today has been the worst day,  maybe it has worn off?

Nausea and hot flash right now, waiting for my second percocet of the day to kick in. My shoulders ache and it radiates down my arms. My knees ache and it radiates up the top of my thighs. Had an adrenal sugar crash type thing in the afternoon today. Usually it happens at night if it does. Inappropriate crying again. 

I feel like shit. 💩

Pain.....

Third day on 10 mg of prednisone.

A lot of pain creeping in. Currently fighting nausea.

10:49 pm.

Laying here with my eyes closed I am aware of pain in every muscle. A pain pill would keep me awake, and not taking one I will be awake in pain. My arms are on fire.

☹️️💪🔥

Clean house

Today is the second day being at 10 mg of prednisone instead of 15. My early morning was okay... my mom and Felicity a friend of ours came out early this morning to help me clean my really messy house. I have been unable to clean properly. Floors got swept and mopped, my mom set up a crafting station,  huge boost in morale. 

My legs are really weak right now, and a lot of pain is settling in. I think because I could not help myself but to try and jump in and clean as well. Took a Percocet, ate a square of medicated chocolate. Have heat on my legs...

Primary Care Doc Prednisone Step Down

Appointment with my Primary Care doc went well. I only had 15 minutes with him so I had to talk fast. They accidentally forgot to book me at the front desk, at least he was able to see me! The list of questions made it much easier and faster. I did record our doctor visit so if I have any questions I can go back and play it.

- Cortisol injections?

Should be given right BEFORE a major prednisone step down, and only a few times a year. (He gave me a shot in the butt and said to step down 5 mg of prednisone)

- Adrenal Support? I can double or triple this if I need to.

- Depression?

Leave meds alone.

- Acupuncture does work, check groupon.

He noted that after my step down to 10 mg I will then step down to 7.5 mg of prednisone.

Preparing for Primary Care Visit

Getting prepared for my appointment with my Primary Care Doctor tomorrow.

To self: REMEMBER that you have a recording app!

Points to talk about:

- Phantom UTI pain has dissipated, Urologists haven't a clue chalk it up to having MS

- Stepping down from prednisone has left me in excruciating pain. I am at 15 mg. Severe weakness, lots of falls, confusion, occasional nausea. Almost intense enough to go to the hospital.

- Cortisol injections when you get to 1 mg? Someone mentioned this.

- I have had more asthma due to prednisone step down. Samples of steroid inhaler?

- I am taking adrenal support.

- Just got Turmeric/Curcumin with Bioperine off Amazon! Not tried yet.

- Is there anything else I can do to help withdrawals? Supplements?

- Script for upped Lyrica has been faxed to Pfizer for review (patient assistance program)

- Severe Depression, psychiatrist suggested possibly upping Carbamazepine? Would that be wise with my slew of pills? Or just leave it all alone?

- Do I need a probiotic? If I do, what probiotic is recommended? 

- In house GI support, would it help tummy problems?

- I will likely have a hysterectomy within the next two months. Thoughts?

- If one of my specialists requests info from Renewed Health and Wellness, are they able to receive it? Do I need to sign something?

- Is there acupuncture for MS available in the building? If insurance does not cover, how much is acupuncture? Have you seen success stories?

List of current meds and supplements:

- B-Complex with Vitamin C

- D-3 10,000 iu a day

- Magnesium 400 mg a day

- Adrenal Complex 2 capsules a day

- Walgreens Stool Softener 2 capsules a day

- Miralax once a day

- Melatonin 3mg at night

- Carbamazepine 200 mg a day

- Clonazepam 2mg+ a day

- Venlafaxine 300 mg a day

- Mirtazepine 15 mg at night

- Tecfidera 240 mg a day

- Lyrica 300 mg a day

- Percocet 2 pills a day

- Aspirin twice a day with the Tecfidera to help with hot flashes

- Prednisone 15 mg a day

- Levothyroxine .88 mg at night

- Pantoprazole 40 mg a day

Pain 😢

So...

Since my last post, pain and associated weirdness due to stepping down from prednisone has not changed much. I am on day 17 sticking to taking 15 mg of prednisone a day. Taking adrenal support. Taking Percocet twice a day for pain.

Yesterday and today was slightly better, I have been able to walk better in the evenings. It has been quite a trip stepping down from prednisone, I knew I was going to possibly have some pain but this is been very intense. 

I mentioned before having the feeling of being in between right and left handed... in this past week I experienced feeling neither right or left legged. And while walking one leg would feel longer than the other, then it would switch sides. That is definitely not a cool feeling. My body parts are feeling disassociated from me.

Tomorrow I am getting Percocet refilled, and getting the new Lyrica script faxed by my doctor. I have a primary care appointment on Thursday I will talk to him about these severe withdrawals from coming off of prednisones. 

Pfizer Frustrations, Pain on the brain

Waking up was excruciatingly painful today. Pain, weakness, brain confusion, in between right and left handed. Every single move I make has to be calculated into how much energy I have to spend on the day. I have had to slow down even further than my normal slow, yesterday and today. Feels like Gravity quadrupled overnight.

Psychiatrist appointment tomorrow. Then going back to my moms for the rest of the day, she wants a girls day. I wish I had more energy! 

I spent most of my morning trying to contact Pfizer (the drug company who manufacturers and provides Lyrica to me for free)

My primary care doctor snow wants me to take it 3 times a day instead of twice, and wrote a prescription for it. I faxed the prescription to Pfizer last week but haven't heard anything from them so I gave them a call today. Again, it was One and a half hours on hold before I could talk to a human being.

I found out some vital information I do indeed have to call in to refill it every month. If my doctor wants to change the dosage on Lyrica it would be a five Day to a six week wait while they look into changing the dosage. This kind of a wait could leave me with no Lyrica for a period of time which I do not want because the side effects of withdrawal are awful. Also the doctor himself must fax any new changes directly to Pfizer, it's like pulling teeth to get my primary care office to fax anything. Ugh.... 

Messy house, Greasy hair and Pain.

Waiting for my morning meds to kick in.

I slept late today.. withdrawals from Prednisone are still in full force. I have noticed more fatigue within the past few days. It is a fight to keep my eyes open. Days have blurred into each other, time has no relevance. It is hard to stay focused when pain keeps wriggling itself back into your mind.

Its sometimes hard to keep personal life thoughts out of this MS blog. But honestly our thoughts, feelings, life going ons do directly affect how MS reacts. I feel like sometimes I have very cut and dry posts, and sometimes they are full of feelings.

James has been working 6 am to 6 pm seven days a week lately. He does not get home until around 7:30 and he is snoring by 8:30. I have not bothered him with things that need done around the house, he is working so hard. But this leaves for a very very messy house. I have been unable to do hardly anything lately.. but at least I know why I am so weak, in pain, and fatigued to the point of needing naps. And I also know that withdrawals are temporary, but it is necessary to get off prednisone.

My snailery is suffering some, but It is physically demanding to keep it up. Even as low maintenance as it is, it is too much right now. 

This may sound icky but I have not washed my hair in a week and a half because of the pain it causes my arms to do it. It is work enough just to get in the shower. Now I just sound like a complainasaurusrex.

I do not want MS or any of my other health issues to define me. I think I am going to go longer than 10 days before next step down of prednisone. It is too hard on my body, and I need to give myself time to build up my adrenal glands. 

I am very chatty, I can tell Percocet is trying to work! 

PAIN!

I wish I could take a USB cord and just plug it into my head and my thoughts would come out in words.

PAIN! Pain has been so bad lately, on Friday I stepped down five more milligrams of prednisone so now I'm down to 15 mg every day. Not just arm and leg pain this is body pain everything every little part of me hurts.

Pain is a constant, I can't get rid of it or lessen it enough to not completely take over. 

I have had to take 2 Percocets everyday and even with the help of opioids I cannot shake it. Medical Marijuana helps some, but with pain as strong as this it is hard to make a dent. Edibles seem to help more, they are so expensive here in Nevada but I am to the point where I don't care about the price of less pain.

Why am I having so much pain? 7 months on prednisone. Just now taking that away from my body. Body is NOT happy.

I'm smart and pay attention to my body. For the most part I am fairly accurate with my assumptions. I did post on my awesome MS Groups on Facebook regarding the pain I am experiencing due to stepping down from pred. Asking if it is normal to feel THIS much pain. I do realize that prednisones is likely suppressing pain and inflammation which is the reason why I was on it in the first place after a bad MS flare. 

I have gotten some feedback from my fellow multiple sclerosis peeps that was useful to me. Most people with multiple sclerosis have not taken it nearly as long as I have seven months is a long time on prednisone and it can wreak have it on your body. I have gained almost 40 pounds which is awful but it is the truth and due to prednisone.

Consensus says:

- It will get worse before it gets better

- Pain is part of withdrawals

- Lots of heating blankets

- Occupy your mind

- Keep stress AWAY

- Eat well, meats fruits veggies

- The cortisol thing (will research)

I am taking adrenal support which seems to be very important when you were coming down from prednisones I also was given some information about taking cortisol when you get down to about 5 mg of prednisone, which I had never heard of but I will research it and if it seems like something that will help me I will talk to my doctor about it.

From people who have come off of prednisones even if they've been on it a month or two they say it's like being run over by A semi truck. Hormones go crazy meaning moods are absolutely wacko, hot flashes come out of nowhere, the "adrenaline" flashes are really bad. I can best describe it as having the feeling of someone scaring you really badly and then having the feeling of being really angry that you have been scared so badly out of nowhere, and then having the feeling of "haha" you got me. All of these feelings happen within about 20 seconds and then repeat itself over and over and over again. It is extremely exhausting to have those emotions. I can only guess since prednisones is so tightly linked with your adrenal gland and hormones that I am having adrenal hormone freak outs.

Also! Having your adrenal gland go through so many emotions ups and downs it triggers my mind to thinking that I have low blood sugar and I need to eat something chocolate very quickly. Imagine having PMS times 20. Your body is absolutely demanding something sugary, I have never had my body feel this way prior to all this MS crap. 

I want to note that I did order Turmeric curcumin with black pepper per my primary care doctor suggestion. Turmeric and curcumin our best absorbed into your system with black pepper and coconut oil.

Bad week, Falls Pred. And Hormones outta Whack

I realize I haven't updated in a little over a week!

I wish I could say that I have been so busy that I have had no time to put how I'm feeling into words.  But that is a lie. Honestly, I have had so many different feelings that every time I start to write how I'm feeling I can't seem to describe it correctly and I scrap it. I should stop doing that, nothing has to be perfect and I doubt anybody is reading this blog other than myself.

I am writing today because my pain is so bad.  

Usually when I am having a really bad time, that is what indicates my brain to want to document it. I should get in the habit of just summarizing my day at the end of every day.

This past week has been bad. I have gotten pretty good at paying attention to my body, and which pills or lack thereof do what.

Main current issues:

- Hives creeping up my throat (due to pred. Step down) I have benedryl.

- Arm and leg pain

- Depression

- Extremely weak all over

- In between right and left handed

- Limbs giving out, lots of falls 🙁

- Cannot get my words out right

- Hormones out of whack. Crying inappropriately.

- EXTREMELY overwhelmed by anything outside my own house. I push myself but usually regret it. Embarrassing and I let myself down. Circles back to depression.

1) I am on my period and that makes all MS symptoms worse. *note* (Period was way late started on January 18th instead of January 1st)

2) I am stepping down from Prednisone. Stepped down on January 10th and January 20th. I am currently at 15 mg per day. Less Prednisone means more pain coming back and more emotional episodes. Only Time will tell how much the pain will come back when I'm off prednisones completely. Hormones have a lot to do with pred.

3) The weather has been very wet and I think it's messing with the pain level of my arms and legs.

I am thankful that I now have a pain pill prescription of my own. (Percocet) I was trying to hold out and only take them when I am in crying pain, but honestly by that point the pain is SO bad that waiting 45 mins. for it to take effect is excruciating and takes up precious energy. So.... I am listening to my mothers advice and taking a pain pill in with my morning medication pile.

Problems with Pfizer

I just want to note that During our visit with Dr. snow he prescribed more Lyrica and gave me the prescription. I have called Pfizer the company who manufactures Lyrica and gives it to me for free to try to figure out how to get my upped dosage to them as in doing to fax it or what. I called on Tuesday the 10th but I called after business hours on accident so I called Wednesday the 11th they said that their office was closed even though it was during business hours I also called Thursday the 12th and they were also close that day and I just called today Thursday Friday the 13th and they're closed again today and will open on Monday. I don't know why they have been closed for three days and the operator who text messages isn't sure because she wasn't in the same state or whatever.

New obgyn, Drugs, Feeling strange

So...

Pain clinic with Dr. Snow went well. Since he is also my primary care doctor he knows what I've been going through. Thankfully it was not a fight to get help, and he prescribed generic Percocet and upped my Lyrica (I will have to figure out how to reiterate that information to Pfizer, the company who supplies my Lyrica for free)

Since I am stepping down from prednisone now, Dr. snow also recommended adrenal support. So I bought some from his office and am taking it. Need to watch for breathing problems coming back while I lower the prednisone as well. 

Tomorrow I am seeing another obgyn. Hopefully he is a decent doctor!

I have felt really weird the past few days, almost too weird to find the words to describe it. In between left and right handed, my limbs do not feel like my own. They want to lift, and I almost feel like my body wanting to float away. Everything aches and feels like it weighs twice as much as it should when I walk. I feel like I have stopped making serotonin suddenly, and am an empty shell who cannot find happiness in anything. I feel as if I have no control over it either.

I hope these awful feelings pass. If I can have a positive mind, I can handle most things. Without it, things feel hopeless. 

Oral Surgery, Pain Clinic

I have not updated in a week!

Thankfully the Nausea and hot flashes stopped once I meticulously went through my meds to make sure that I am taking them all.

Oral Surgery was on the 4th, I now have five teeth less than I did. Taking Vicoden and Amoxycillin from Oral Surgeon. 

Pain clinic is tomorrow at 9:50

Confusion, Severe Nausea

I felt really awful yesterday. 

I was so nauseous and confused and the hot flashes were so are bad. Also I realized that I have not taken mirtazapine in about 4 days at least. (My sleeping pill which also has antidepressant properties) so maybe that is part of this nausea thing. I cannot believe I am forgetting to take important pills. That scares me.

I was in bed all day with my earplugs in because sounds were like knives to my ears. Light made me even more sick. I watched two movies on mute in the dark, Honestly I dont even remember what I watched. I didn't realize it was new years eve. Fell asleep very early, slept for 15 hrs.

Note to self- Today

Was starting to feel nauseated and dizzy and a lot of arm pain. Took pain pill and Nausea and dizziness is a lot better!