B12 Rights

01/18/2022

Here’s a helpful letter I got from one of my support groups about b12 deficiency/pernicious anemia. If this sounds like you or someone you care about, feel free to reach out with questions!

02/05/2021

Very interesting read on how long term COVID symptoms are similar to B12 deficiency symptoms.

https://www.b12deficiency.info/blog/2021/01/07/long-covid-treatment-vitamin-b12-vitamin-d-and-other-vital-nutrients/

Long COVID and COVID Long Haulers COVID has gripped many lives for more than a year now and in some countries, people with Long COVID are lucky enough to be treated with essential nutrients which t…

01/19/2021

Today marks one year ago that I’ve received my first B12 injection at the neurologist’s office. They say that you get worse before you get better once you start injections. Some people take months to recover and some take years. I feel hopeful that I’ve got a year under my belt. It has been a hell of a year...I’ve definitely been worse since beginning treatment... shakiness, internal tremors,rapid heart rate, brain fog, paresthesia that wakes me up, syncope, mouth ulcers, tooth pain, etc... Today I had a follow up with my neurologist, the same one that told me that he would be recognized as a “quack” if he prescribed me as much B12 as I was requesting. Today, I may have failed the “sobriety test”...I couldn’t walk toe to heel on the wooden plank, but I did get all the B12 I requested. I am so grateful to my family and friends that continue to be a support to me everyday...especially my husband...the one who gives me my shots religiously everyday because I’m a baby. Lol! I feel so badly for people in other countries that are in lock down and their injections have been postponed...hopefully they have a “Matt” to give them injections. Cheers to being one year closer (hopefully) to get these symptoms in control!

01/11/2021

How many of us have been misdiagnosed? I know I have for over 20 years!

12/25/2020

Thank you for being a part of this group! I’m more grateful than you’ll ever know❤️!

12/19/2020

This group is growing and to me that is the best gift! If you se this can you spare a second and shoot this post a like or a quick comment. This way I show up in your feed. Petition for B12 rights coming soon! Please invite your friends and friends of friends.

12/10/2020

I’m looking for stories! Do you or a loved one suffer from a B12 deficiency...or do you suspect you do? I want to hear all about it. Maybe we can all help each other! I’d also like to collect stories for my petition that is in the works. Please message me with stories, questions, or leave a comment here!

12/07/2020

Help me make changes in regards to vitamin B12 deficiency in the health care system before this vita

11/26/2020

What a crazy and crappy year...but still SO MUCH to be thankful for! Happy Thanksgiving, friends to this who celebrate! And if you are not in the US, please know I’m so very thankful for you...you’ve helped me go global! Please continue to like and share this page. I want to see how far we can take it!! ❤️❤️❤️

11/25/2020

This isn’t a post to sling my new obsession with Color Street...lol! I wanted to do more writing/blogging about my pernicious anemia journey. I want to KEEP IT REAL. FACEBOOK LIFE IS USUALLY SO GLAMOROUS...I can tell you that everyday I feel like I’m struggling...to remember the name of an object, to keep my balance, to not sleep the day away...but it’s really hard. ( Ummm...lol!)

Wanna hear some interesting stuff?!
IF YOU ARE A VEGETARIAN THIS MAY GROSS YOU OUT...WARNING!

People who have been diagnosed as having Pernicious Anaemia will be unable to absorb Vitamin B12 from food. PERNICIOUS MEANS DEADLY OR FATAL. In the 1920’s it was discovered that feeding patients raw liver could keep them alive...prior to this revelation patients died from the disease. After WW2 Injectable “artificial” B12 became available.

Currently, as long as a diagnosis is made, people are no longer dying...PHEW! When a person’s B12 levels get “corrected” (it can take months to years) sufferers can begin to recover and live a more “normal” life...right now I’m not “normal”...but I think many of you already know that! 🤣🤣Haha! I feel like “damaged goods” or “slightly irregular” and should be on the racks of TJ Maxx or Marshalls. God, I wish I had the energy to go peruse those isles! However, I have recently felt very vindicated when my husband told me he was talking about me at HIS physical and his PA said, “ Oh man, I feel so bad for your wife. That B12 s**t will knock you on your ass!” Finally, someone who really gets it and I don’t need to explain it. Fast forward...Matt made me an appointment with his doctor and I’m super excited to “nerd out” with him on the long list of symptoms people experience. People with Pernicious Anemia will always need B12 injections and their treatment should never be stopped...even when symptoms have improved.

So...yes, this info may seem random but I can’t help but wonder, “What happens if people aren’t diagnosed?” They are just supposed to die a slow death and have no idea why? That’s where you guys come in (that’s what she said) PLEASE PLEASE PLEASE CONTINUE TO SHARE MY POSTS (AND IF LOVE IF YOU TAG ME )ABOUT B12 DEFICIENCY SO WE CAN HELP OTHERS! I AM SO HUMBLED BY THE AMOUNT OF PEOPLE THAT HAVE REACHED OUT TO ME WITH A QUESTION OR CONCERN BECAUSE THAT MEANS THEY ARE READING! I’m determined to take action to make a change in the diagnosis of B12 deficiency and the protocol for treatment here in the US. The more you share, the more we make aware. Look at that, I’m a poet and I didn’t even know it.

Be sure to follow and share my B12 RIGHTS PAGE AND THE NEW GROUP PAGE “THE INVISIBLE VITAMIN.” I’m so proud to have a mentorship option on that group page now because really...we all could use some help!

11/22/2020

Here are the neurological symptoms of B12 deficiency. The circled ones are the ones I blame with hitting my head going into my shed...pretty sure I have a mild concussion.

11/21/2020

It’s hard to advocate for yourself when you feel sick. The bottom line is, people shouldn’t have to. My neurologist literally said to me, “ If I gave you a script for as may injections you’re asking for, people would call me a quack.” Guess what...after he heard the facts I presented to him...he is now official a QUACK! 🦆🦆💥BOOM!

11/18/2020

Thank you so much to all who like/follow this page! It means so much to me to see that people are reading, sharing, and becoming aware! Please continue to share with friends and encourage them to share, etc! Knowledge is power!

Comment here if you shared this page so I can personally thank you!

11/13/2020

If you have never had anyone you know go through an undiagnosed B12 deficiency, than you probably have never watched this. It’s based off a true story and is an inspiration. The only thing that I didn’t care for was the inaccuracies of what it’s like to “heal” (it definitely takes time.) According to some support groups I am in it can range from 4-6 months to years...and that is if your symptoms are reversible. The acting is not amazing, but the message is good. Sit back folks, this definitely reminds me of an After-school special! Did I just date myself?

If you’re currently in a country that has gone back into lockdown, you may have some extra time on your hands. If you’re in the US, and if you’re like my husband and I, you’ve also “finished Netflix” and are looking for something else to watch:)
https://m.youtube.com/watch?v=OvMxJ6GRBNQ

Feisty ER Nurse takes on the medical establishment when she uncovers an epidemic of misdiagnosis. Award-Winning Feature Film Based on the True Story of Sally...

11/11/2020

Doing my happy dance! Celebrating my first of many (I hope) small victories!

Today I found out that an APRN I have known for a few years and has heard all of my stories has decided to start requesting B12 serum, homocysteine, methamalonic acid, and vitamin d levels be tested upon admission. I’m so excited! I hope that this is just the beginning of more and more people taking B12 deficiency more seriously! Woohoo!!

Thanks all and let’s keep sharing this page!

11/08/2020

What are your favorite ways of showing self-care?

Part of healing yourself from anything is showing yourself self-care. Even though I like to think I show myself this...my track record has proven that I almost always fail at putting myself first. I’m about to take a nap so I’d love to see some comments when I wake up!

11/05/2020

In honor of my husband’s 47th birthday today, I wanted to share something he wrote on a Pernicious Anemia/B12 deficiency Support Group page on October 21st. He has been vital in my road to recovery. Hopefully, you can share this story with someone and help make their journey a little more smooth! Happy birthday to my “Superman!”

Just wanted to mention how important hydration is when having injections. My wife had to be rushed to the ER because she was exhausted and began to feel as she was going to lose consciousness. During this scary scene her extremities became very rigid and became short of breath.

After hours in the ER and I explained to more then 5 medical professionals that my wife has pernicious anemia, takes B12 injections daily and have had a history of passing out related to this disease. I mentioned that she may be dehydrated and low on potassium which may be a cause of what’s happening at the moment. Sha was dizzy, unable to open her eyes and barely put two words together.

Her blood pressure was consistently 175/110 for 3 plus hours. Finally after every x-ray, scan, bloodwork was completed they finally decided to hook up an IV and give her fluids. It took almost 5 hours to get the fluids after I began the conversation saying she is dehydrated when we arrived. With 2 L of Saline we watched her blood pressure come back down to 128/94. That took about 40 minutes.

I know this is very long, but one of the symptoms of B12 deficiency is memory loss and foggy brain. After her blood pressure came down and she was hydrated she realized she has been forgetting to take her high potassium diet and has not been drinking as often because she was just forgetting to do so.

This is just a reminder on how important it is to stay hydrated and if you are going through anything like my wife did, having a partner to pay attention to water intake I think is very critical. My wife and I hope this helps out anyone that may struggle with this related situation.

11/03/2020

One morning I was frantically getting ready for work. I kept saying, “ I just had it, where’s my bra?” Fast forward a solid and embarrassing amount of time and it was already on me. There was also the time I washed our clothes for a solid week with 2 types of fabric softener and the next week I used 2 types of detergent! Lol!

One of the main symptoms of b12 deficiency is brain fog/forgetfulness. Let’s get silly for a bit...some say “laughter is the best medicine!”

Tell us a funny brain fog memory!