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.