Pernicious Anaemia Society

***Please note the difference in spellings of ‘anemia’ (US spelling) and ‘anaemia’ (UK spelling). The referenced organization name and website are spelled with the UK version “anaemia”.

I think the thing that everyone that is diagnosed with Pernicious Anemia or B12 Deficiency has in common – we want MORE INFORMATION!

We want to find others who have had similar experiences – only if it’s a justification of – “really, I’m not crazy.”

Even if you are lucky enough to have a doctor who is knowledgeable enough about B12 to support and treat your condition, it’s sometimes family and friends – who more than likely have the best intentions – are the ones who really don’t understand.

Well, you know what? That’s okay. And you know what else? You’re not alone.

Several months after being diagnosed with Pernicious Anemia I found this organization and website and donated to become a life-long member.
Pernicious Anaemia Society – www.pernicious-anaemia-society.org

The Pernicious Anaemia Society is an international charity located in Bridgend, South Wales. This is from their website:
“The original aim of the society was simply to provide an easy to understand explanation of Pernicious Anaemia to newly diagnosed patients – at the time there was no such information available.”

However, they do a lot more than that. You can read a full explanation HERE.

Go on the site, become a member and donate. It costs £20 – or about $30 in US dollars depending on the exchange rate – to become a member. Consider making additional donations as well. These people are doing great things.

Something else I found on the website that amazed and infuriated me at the same time:

“Some of our members were identified as having extremely low levels of B12 in their blood – but had none of the symptoms of B12 Deficiency.  Some members had all of the classic symptoms of Pernicious Anaemia/B12 Deficiency but had B12 levels in their blood that was over, in some cases well over the lower threshold used to determine B12 Deficiency.

Even where low levels of B12 is detected, only around half of patients doctors further investigated the cause of the depleted levels of B12 – the most common reason – “the treatment will be the same whether you have Pernicious Anaemia or not”.

The infuriating part for me is the last sentence above. It’s true that the treatment may be the same – however the cause is not the same for everyone. There may be other things to consider. It makes me angry that modern Western medicine always takes the “band-aid” approach to health care.

Over the years since I have been diagnosed with B12 Deficiency and Pernicious Anemia, the doctors and health professionals (including the doctor that diagnosed me) has convinced me that I don’t need the injections after the initial treatments, the sublingual tablets do exactly the same thing. I disagree.

However, my point, you have to be very proactive. Do your research, ask the questions, get as knowledgeable as you can. Listen to your intuition. If someone says they can’t help you, keep digging until you find someone who can.

“Just keep swimming…..just keep swimming….”

 

The “B12 Chronicles” will soon be it very own website

Since early 2010 the B12 Chronicles has been just a simple blog that rarely get’s any updates.

However! In the coming weeks the B12 Chronicles will be expanding and will soon have it’s very own home (aka website).
The new URL has not yet been determined but there are some big things planned. As I well know, resources for B12 deficiency is hard to find other than companies who just want to sell you some products.
This will be a place for information, resources, a community gathering place and a way to get the info you need or at least point you in the right direction.

Stay tuned!

The B12 Chronicles is getting a new web domain

 

Lemon and Cayenne – NOT The Master Cleanse

“I’m obviously crazy. It’s only logical…right?”

Those that have experienced B12 deficiency may be able to relate to the feeling of deep desire – almost a yearning – of wanting to actually FEEL healthy, energized, not tired, and joints and muscles not stiff, sore and aching. However, the recurring disappointment time and again of NEVER being able to get there; at any level. The times when you worked tirelessly and diligently to eat the rights things and keep at bay sugar, processed foods and the other crap we know isn’t good for us. The times when you painstakingly drug your lug of a body out of bed at 5am to get in a workout before work and yet again in the evening to keep your body – as you could only hope – to keep moving, energized and feeling good.

Yet, sadly,doing the right things with nothing to show for it and having the self-esteem blowing days when you wake up weeks later and realize none of your dedication and hard work has made any significance improvement. Still not getting good sleep and waking up feeling as though you were on a weekend drinking binger. Still dragging your body to the workouts with the trainer and not being able to finish the treadmill workout without your legs being in so much charlie-horse pain that the streaming tears finally turns into an emotional breakdown in the middle of the gym. The only response you can give is your legs hurt. Your trainer, like everyone else, thinks you give up too easy and you’re a quitter. Any motivation and inspiration that you had was quickly replaced by a belief there is something wrong with you. Nobody knows what. The doctors tell you nothing is wrong, it’s in your head. Then you think, “well, I’m obviously crazy.” It’s only logical…right?

You don’t forget that feeling. Even when you are healthier and some ‘miracle worker’, whoever they may have been, discovered your B12 deficiency and started you on the path of treating and managing it. Your body might not be feeling the pain, but your mind does not forget that feeling of failure that you have no control over. What a horrible and vicious cycle and I am here to hopefully help you lessen that burden. No matter how many times you have started and felt like you have failed. You start again. And when you fail again. You start again. Failure is only a perspective. Putting aside any expectation of the outcome, other than “I am going to be better.”

Credit: lifeoutsideoflaw.com

I am starting again. I am going to be better.

I’ve joined a 30-day ‘Booty-Bustin Boot Camp’ that is being held by a local yoga-pilates-barre studio. The first week is a 10-day cleanse of drinking warm lemon water with cayenne pepper 2-3 times a day. We are also taking our measurements this week so we know what we’ve accomplished at the end of our booty buster. Since being instructed to do this 10-day lemon and cayenne cleanse, it seems like I’ve just happened along articles talking about this very thing. Who knew so many people do this on a regular basis.

After a little research, it seems that many health and wellness people recommend this practice.

However, the mixing of lemon and cayenne pepper is NOT to be confused with the wildly popular Master Cleanse that includes adding maple syrup and this is all you eat or drink for the course of the cleanse. The belief behind the lemon and cayenne cleanse is to get our bodies and internal organs to detox naturally with the lemon and water and help kickstart fat burning and metabolism with the spicy cayenne pepper. I have to say I do like the taste of the mix. It is slowly replacing my need for coffee in the mornings. The cayenne pepper gives it a pleasant kick if your taste buds are naturally on the sassy side.

Today is day two of the lemon and cayenne pepper mix. So far so good. However there hasn’t been any booty busting yet. I’ll let you know how that goes.

Here’s to an ongoing feeling of health, never giving up regardless of feeling like a failure, and knowing that we ALL have a crazy space that we live in. Don’t let anyone else tell you what your crazy space is and how to live in it. Just live in it. Own it.

“Welcome to my crazy space – where attitudes and muffin-tops are always adjustable!”

 

Walking In Your Truth

It has been awhile since I have updated this blog. Not lack of good intention – mostly lack of clarity of the “truth” I want to share. It’s like the “What I Know For Sure….” statements that Oprah shares on her shows and in her magazines. Statements of profoundness and ‘a-ha’ moments, and those things you know, that you know, that you know.

My truth today has to do with letting go.

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“Silence becomes cowardice when occasion demands speaking
out the whole truth and acting accordingly.” 

― Mahatma Gandhi

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When you have gone through years of experiencing feelings of unhealthiness, pain, discomfort, weakness, brain fog, depression – a truth you know to be true, because you’ve lived it, only to be written off by medical professionals essentially “it’s in your head”, it creates lack. Lack of confidence, lack of knowing or believing what is and isn’t true, lack of energy, lack of motivation to continue to search out more answers, lack of self-worth, self-love, and self-anything for that matter. Some days it’s just easier to live with the unhealthy truth that is familiar, rather than stepping into that place that will throw the entire system into a roaring cyclone of uncertainty, and discover new truths that will take its place.

I am here to say – bring on the cyclone. You cannot grow if you stay the same. You cannot learn if you don’t seek. Most of all, dare to be bold. Own your truth as you know it. You may feel alone because no one else around you understands what you experience. I’m here to say, that’s okay. It’s not easy, but it’s okay. Because, even though you may feel alone, there are people out there who has experienced similar things, and there are people out there who can help you. You have to be be bold, daring, full of faith, and vulnerable to the possibility of what may seem like another failed attempt for answers or a label/diagnosis.

Let go of the idea of that need or desire for a label or diagnosis.
The need to be healthy is way more important then the need for a diagnosis.

I was having a conversation with a long-time friend of mine, several months ago, who has battled Lyme’s disease for the better part of 10 years. She reminded me the destination of this journey is not at the diagnosis or label – although, (trust me on this one) you feel there would be a ton of weight and stress lifted if you had one. The destination of this journey is not a destination at all. It is the journey itself.

It’s the choices we make in each moment of every day to be consistent in what we know today. Today I know I need to create the right conditions for my body help heal itself; feed my body highly nutritious food in the right amounts, drink as much water as I can, give my body the opportunity rid itself of toxins and stress through regular high-intensity exercise, and consistently provide my body with probiotic supplements, Omega-3’s, calcium and B & D vitamins. That, at the very least will provide an environment that will encourage health and healing.

To catch you up in my journey of B12 and Vitamin D deficiencies since 2010, I will be posting my experiences of the following as a continuation of my journey:

• 2010 – Experiencing old things in new ways

• Fall of 2011: Getting my B12 levels checked after having recurring symptoms of B12 deficiency. The results – my levels almost as low as they were when I was first diagnosed

• January of 2012: Sought out a naturopathic doctor who “diagnosed” and put me on a cleanse for candida. (Which after learning this makes sense as to why I cannot keep my B12 levels at a higher level.)

• The effects of the lack I mentioned above; lack of discipline in being consistent with eating healthy food, exercise, water, supplements, lack of controlling stress and lack of taking care of myself physically and emotionally

• Experiencing more symptoms of imbalance in my body: eczema and skin issues that won’t go away

• Learning the hard way I was overly toxic and cleansed too quickly and resulted in the toxins exiting my body through my skin – which also had a reoccurrence  9 months later

• January of 2014: Life changing work in personal development and self-confidence

• April of 2014: stepping out into a 3 week Oligoantigenic Diet – that “eliminates all foods that could potentially provoke an allergic response”, and “seeks to resolve inflammation in the gut”. With the goal to re-establish a healthy environment to which my body can properly absorb its nutrients and create a less acidic environment in general.

• I will also share some product lines that have above and beyond profoundly changed my life: particularly Rodan + Fields 

 

I think I have addressed this in previous posts – but I do want to be very clear in stating – I do not have medical training, nor am I a doctor. All of what I write is based on my personal experience and research I have done. The intention for writing this blog is for the purpose of sharing my story is giving someone else encouragement and hope of finding resolve and health in their own lives.

As someone who has been in, around, down and through this struggle, it’s important to find clarity and know what your truth is today. Some days, you might not have any idea what is true, what isn’t true, who to believe, or even if you believe what you are experiencing is real.

Dare to be bold. Know your truth.

In the beginning of 2014 – I created a motto that I have lived by daily ever since. (see below). That’s all I can do.

 

 

 

The Journey Continues….

It’s been a while since my last post. No excuses. It is what it is.

As you might have guessed, especially if you have experienced similar things as I have, you will know – the battle never ends…but the journey continues. (Oh…did I just make up a quote? I doubt its unique, but so profound – but I’ll take credit…for now. HA!)

The journey since my last post is a alot of things.
Ups…
Downs…
Disappointment…
Victories…
Failure…
Learning…
Sickness…
Health…
Gratitude…
Self-Doubt…(we beat ourselves up don’t we)
Hope…(yes I said hope)
Guilt…
Pleasure…
Guilty pleasure…
But, I guess regardless – this is life. No matter the scenario.

Am I better than i was yesterday? Yes!
Am I better than my last post? Most definitely.
Do I have a ways to go? Absolutely
Have I given up? Most definitely, absolutely NOT!!!

I will be writing more about my journey, where I’ve come from and things I’ve learned.
Where I’ve failed and where I’ve found victories.

More to come.
(Yep…wait for it……)

“The battle never ends…but the journey continues.”
~Lisa Johnson

(Smiley face smiley face smiley face)!!!

 

Thought for 2010…..Faith, Hope, Love

It seems there is a theme brewing these first few weeks of 2010.  A lesson to be learned. Some serious stuff to ponder. Some important stuff to remember.

This blog post is not B12 related or any vitamin deficiency. But it is health related. Good health is more than our physical state. It’s our mental and spiritual as well.

With a heavy heart, I am meditating on how precious life is. How in a moment it can all change.

After a close call car accident on New Year’s Day for my sister’s family and what could have been very serious injury or even worse, a devastating loss and just today hearing about a good college friend who was diagnosed with stage 4 melanoma cancer with tumors/lesions in her brain and abdomen, I feel as though God has presented me with yet, another teachable moment.

We go along everyday, most ordinarily, planning our day’s work or activities, not giving a second thought to how quickly, and unwantedly, our lives can change.

Count your blessings. Hug your kids. Love your husband/wife. Pull your family in close. Reunite with old friends. Make amends.

Life is too short.
Live well.
Love feverishly.
Pray.
Have faith.
Hope often.
Love always.

 

Where The Sun Don’t Shine: Vitamin D and Vitamin B12

“Time and health are two precious assets that we don’t recognize and appreciate until they have been depleated”
~Denis Waitley

You’ve heard the term ‘sun worshippers’ referring to those people who live their lives in the sun scantily clad with the only goal of getting the darkest tan they can. As a photographer, I am also a sun worshipper, but for a different reason. I’m not so much worried about the sun itself, but it’s reflective light. Most day’s when I’m photographing, I’m either waiting on the light to change or hurrying up before it does. Seems like I’m constantly chasing the sun.

But now, more so than ever, it seems my relationship with the sun is leaning towards the former. There’s much to be said about soaking up the sun, and I am realizing more and more how true that is in my research and journey with B12 deficiency.

In addition to being diagnosed with B12 deficiency and Pernicious Anemia, I was also told I was Vitamin D deficient.

Sunrise at Crystal Beach, Galveston, TX . One week before hurricane Ike hit the Gulf Coast. http://www.lisamjohnson.com © Sept 2008

Which is not too surprising since I lived in a city and latitude notorious for Vitamin D deficiency; Boston. At 42 degrees north latitude, there isn’t sufficient UVB radiation several month out of the year for adequate vitamin D synthesis. Which is the case for people living in other cities in that range and north.

The combination of being Vitamin B12 deficient and Vitamin D deficient, in retrospect, for me was a vicious cycle. How long this was going on, I’m not sure; but indeed well before I moved to Boston. In my research and reading thus far, I have yet to find solid information correlating vitamin B12 & D deficiency, or that one causes the other. But, I do know the symptoms are similar, especially in respect to fatigue and cognitive functions.

Technically, vitamin D is a fat soluble vitamin which encourages the absorption of calcium and phosphorous. People who are exposed to normal quantities of sunlight do not need vitamin D supplements because sunlight promotes sufficient vitamin D synthesis in the skin. (Reference)

Even when I lived in sunny, Austin, Texas prior to living in Boston for a year, I went to work when it was dark and came home when it was dark. I was working 60-80 hour weeks, working late nights on emails, conference calls and meetings with our overseas suppliers and factories. I did get my share of Texas sunshine as I am more of an ‘outdoor’ girl by nature, but just not feeling well and healthy in general despite following several doctor recommendations and chiropractic visits, kept me from having the energy from doing as much outdoor stuff as I wanted. The effects of the B12 deficiency (and Vitamin D, I would think), including never waking up feeling refreshed after sleeping, made it hard to stick with an exercise plan and effort it takes to change to and stick with lifestyle of eating healthy.

Of course some days were better than others, and all my attempts were not futile, just short-term; not ever getting better at the big picture level. With ample amount of coffee and sucking it up and making myself do the things I needed to do despite how I felt, I got by. The important things got done. Other things didn’t. Some didn’t get done very well despite my natural tendency to be anal and somewhat of a perfectionist. Frustrating for me to say the least.

Recovering from Vitamin D deficiency
After receiving the diagnosis of the B12 deficiency and Vitamin D deficiency together from my doctor in Boston, I have to admit I honed in more on the B12 in my research and reading. Not that the Vitamin D didn’t seem important, just not as monumental as the B12.

Vitamin D? Yeah, yeah yeah….bring on the B12 I say!
I couldn’t be more wrong.

Along with the series of B12 injections I took a prescription dose, 50,000iu, of Vitamin D once a week for 12 weeks. Luckily, I only had to take it once a week, since the supplements are $3 each (yikes!). After I finished the prescription dose, I continue to take over the counter supplements combined with calcium twice a day.

I’m sure this happens to most people, but I start to pay attention when the same things continually, and randomly come across my plate. Which has been the case with Vitamin D just in the past few weeks. Articles I just happen upon reading, conversations with various people, blogs I’ve come across and a doctor’s visit I went on with my mom.

In one of my recent blog posts I explained that after my B12 diagnoses, I had my mom get checked for B12 deficiency. It worked out, thankfully, that she was able to see my doctor in Boston, but needed to take her treatment here in South Dakota, but was having trouble finding a doctor who was willing to treat her for the B12 or knew anything about B12 deficiency.

So from recommendations from friends, my mom found a doctor she was hopeful would be knowledgeable about the subject. So I went with her to her appointment; I wanted to hear what he had to say. In the discussion, he talked about the B12, but he told her that the Vitamin D was much more important at this point. I’m not sure it’s because she didn’t have as severe of symptoms of the B12 deficiency as I did or because she was also being treated for her thyroid. But regardless, made me reconsider my thoughts about Vitamin D. I left there wanting to do more research and reading about the ‘sunshine vitamin’.

According to the Mayo Clinic website:

‘Vitamin D is found in many dietary sources such as fish, eggs, fortified milk, and cod liver oil. The sun also contributes significantly to the daily production of vitamin D, and as little as 10 minutes of exposure is thought to be enough to prevent deficiencies.’

and

‘The major biologic function of vitamin D is to maintain normal blood levels of calcium and phosphorus. Vitamin D aids in the absorption of calcium, helping to form and maintain strong bones. Recently, research also suggests vitamin D may provide protection from osteoporosis, hypertension (high blood pressure), cancer, and several autoimmune diseases.’

Another good resource I found for information is WebMD.

Symptoms of Vitamin D Deficiency:

• Chronic Fatigue
• Cognitive impairment
• Weak bones (Osteoporosis)
• Bone pain (Osteomalacia [similar to rickets])
• Muscle weakness
• Increased risk of death from cardiovascular disease
• Severe asthma
• Cancer
• Type 1 & Type 2 Diabetes
• Hypertension
• Glucose intolerance
• Multiple Sclerosis

Vitamin D Me Please!
As a result of the constant ‘in your face’ Vitamin D propaganda coming at me these past few weeks, as I mentioned earlier, has given me a new perspective and education about Vitamin D.

I continue to take my prescribed supplements faithfully, and with the weather being subzero lately living in the Midwest with the sun nowhere to be found, I have decided to also go to a tanning bed at least one time a week. I am aware of the controversy about skin cancer and tanning beds, but at this point I have to weigh my risk and reward.

I go in the tanning bed for 10 minutes at the most and will guarantee I will not be looking like some of the people I see coming in and out the tanning salon who have similar characteristics like my brown leather purse. Nothing like matching accessories. (Yikes!) No thank you. However, I will like the fact that I won’t be blinding the people anymore at the gym with white legs. I’m sure they’ll appreciate that as well.  🙂

 

Finally a morning person

I love the sweet smell of dawn –
our unique daily opportunity to smell time,

to smell opportunity –

A latte from my favorite coffee shop in Harvard Square, Cambridge, MA. Crema Cafe. Notice the fancy foam design on top!

each morning being, a new beginning.
~Emme Woodhull-Bäche

I’ve always desired to be a morning person. You know those people who jump right out of bed at the crack of dawn and have 10 things accomplished before 8am. Yeah…one of those bitches. 🙂

But sadly, I just could never be a morning person, no matter how hard I tried. I’m sure some of you who know me well can testify how…ummmm…’delightful’ and ‘pleasant’…I could be in the mornings. Bring that girl some more coffee! Stat!

As someone unknowingly B12 deficient, sleeping in was a part of my life and getting out of bed was a process. Unless of course I had slept right through my alarm and was late for something. Then I was lucky if I made it out of the house with matching shoes. When I say a process, I don’t mean a ritual, I mean a painstaking process that involved many sporadic steps. Some mornings I would be lying there knowing I need to get out of bed, and thinking to myself, “I just can’t open my eyes.” I would lie there alternating between dozing off and hitting the snooze button until I would finally decide I HAD to get out of bed.

If you’re one who enjoys a few cocktails now and then, you know how you feel the next morning after you stayed too long, too late, enjoying one too many rounds. Minus the room possibly spinning and a rager of a headache, every morning, regardless of my alcohol intake, my head was in that hung over fog. That is the best way I can describe it.

In my pre-B12 days I just couldn’t get my mind kickstarted in the morning it seemed. I was slow to react, and any extra noise or stimulation other than stepping into a hot shower was enough to put me over the edge. Sometimes finding the energy to even take a shower was a feat in itself. And don’t even think about having an intelligent conversation with me early in the AM, especially on the phone. Inevitably I would have to revisit the conversation anyway later in the day to learn what was said or get the details I needed, or it was completely lost and forgotten.

It didn’t matter how much I had slept. Four hours. Seven hours. Fifteen hours. It was the same.
I had heard a rumor that when you sleep, your body regenerates itself for the next day and you wake up feeling refreshed after adequate time. Being B12 deficient, it felt like a rumor as I never woke up feeling felt refreshed. I always felt tired, lethargic, in a hung over fog, and no energy or excitement for what the day had to offer. Oddly, I felt guilty for feeling that way. I felt I was somehow responsible for causing the way I felt even when I was strictly eating healthy and forcing myself to stick to my exercise plan. It was truly a vicious cycle.

No amount of caffeine seemed to make much of an impact, but coffee, just because I love coffee, a good breakfast and exercise did help some to get the day started. Although the B12 deficiency had made exercising slowly become very painstaking; physically and mentally – it was not fun for me despite growing up being athletic, playing sports and very active. It was hard keeping on a regular exercise schedule even though it helped me feel better, but most times it was more painful, in more ways than one, than the benefits were worth. But that’s another topic for another time.

After I was diagnosed with B12 deficiency and started the injection treatments, that entire, stab-me-with-a-dull-spoon process subtly – but at the same time – suddenly changed. The first week of my treatment, I had 1 shot daily for 4 days. Three of those four days, I slept for at least 12 hours each night. I would come home from work about 6 or 6:30pm, eat some dinner and I was exhausted and ready for bed by 7:30pm. It was almost like my body was craving the rest and was trying to get caught up. I’ve never slept so good in all my life. Before, I could get by on 4-5 hours of sleep and not think twice.

The next four weeks, I received one shot a week. After about the second week, like magic, I found myself waking up at 6am sharp every morning. My eyes were open, full of energy and I was ready to get out of bed. No alarm clock. When my eyes popped open, I would look at the clock and it was always 6am or at least within 10 minutes of it. I just couldn’t lie there anymore. I had to get up and do something.

My dog Harley, especially loved this new phenomena because I had gotten up so early, I had time to take him to Fresh Pond (an off-leash trail near my house in Cambridge, MA) before going to work in addition to his normal outing in the evenings. Not to mention the 2-1/2 miles walk/run for me was oddly painless; no calf Charley horses, my feet didn’t hurt or go numb, and I wasn’t completely exhausted afterwards and needed sleep.

I had always heard that people do their best work or are more creative in the mornings. Prior to getting B12 injections, it was late night for me, normally after midnight when I could do my best work or get anything done. Mornings? Forget it!!!!!

Post B12, I can proudly say, I lavish in my early mornings getting projects done or thinking of new ones, of course accompanied by my favorite coffee.

I am able to write (which I thought I had permanent writers block before). I work on editing photos and updating my website. Read (which I had lost the ability to concentrate long enough to even read a page). Exercise. Take care of mail. Pay bills. Laundry. Clean house. Shower. Design and make jewelry. Watch the sun come up. Make breakfast for my Dad or entire family depending on the day. And even enjoying some of the minute tasks, I had trouble even completing. I am enjoying the small things, but more importantly, thinking clearly.
Absolutely amazing. It’s funny how such a small thing can have such an impact. An entire lifestyle change.

So if  you’re up early and want to chat, give me a call. I’m up. I promise the conversation will be coherent and intelligent.
But look out, I’m now one of those annoying early AM ‘bitches’.  🙂

 

Is there a doctor in the house? Is there a doctor anywhere?

Aerodynamically the bumblebee shouldn’t be able to fly, but the bumblebee doesn’t know that so it goes on flying anyway.
~Mary Kay Ash

Bee In Flight ~ Lisa M Johnson © 2007

As I mentioned in an earlier post…after I was diagnosed with B12 deficiency and pernicious anemia in August of 2009, I encouraged the rest of my family to get checked. But, especially my mom. She had some of the same symptoms I had, plus a few others I had not experienced that we discovered through reading and research.

Towards the end of October my mom and sister traveled 2,000 miles to visit me in Boston. I had made an appointment for Mom to see the doctor that had diagnosed me. As it turned out, she was also B12 deficient. Which wasn’t surprising to me given some of the research I had done. My mom also takes medication for hypothyroidism, and I had read that this could be directly related to the B12 deficiency.

Side Note: I seem to find conflicting information on what is considered the normal range of B12 and what is considered low or ‘deficient’.  The results of my initial B12 blood test was in the low 200’s pg/ml (picograms per millilitre) – I believe it was 206 pg/ml. My mom was just a bit higher than that, around 220 pg/ml. My doctor considered those levels very low and ‘profoundly deficient’.

My mom was only visiting Boston, and of course would not be able to take treatment 2,000 miles away. So they sent her the paperwork with the results and the prescribed regimen of B12 injections as well as a new prescription for her thyroid medication. (My doctor in Boston felt her thyroid medication was being mismanaged, and she wasn’t getting any benefit from what she was currently taking.)

Upon returning home, my mom made an appointment with her regular doctor to start the B12 injections, and they refused to treat her!?!
Are you kidding me? Really?

Her doctor confessed that she didn’t know much about B12 or B12 deficiency and she would have to read up on it. Meanwhile, she would be willing to give her one injection a month.

WHAT? SERIOUSLY? She has her test results in hand and written notes from the doctor herself.

This is what makes me angry about the medical community. It’s more profitable for them to treat the symptoms instead of finding out the cause – and the hard part was already done by my doctor in Boston! Hello! But I digress, as this subject could be a post entirely on its own, and it wouldn’t be very productive since the content would be venting and loaded with personal opinion.

My blood was boiling as I began searching other doctors in the area. She has to get the right treatment, or it’s not going to do any good. My search was quickly stalled after I realized, ‘how do you find a B12 doctor?’ Googling ‘B12 doctors’ obviously doesn’t return any relevant results. There are no listings for doctors who specialize in B12 deficiency or pernicious anemia.

As I write this posting today, I am still on the hunt. My game plan now is to get recommendations from friends who think their doctor is groovy, and start making phone calls and see if they would talk to me on the phone about their experience and knowledge about the subject. If that doesn’t work, making appointments with a few of them and talking face-to-face, but I’m afraid that could turn quite costly paying for several office visits. Since I am currently living in the same city as my mom, I also need to find a B12 knowledgeable doctor, so I can get a checkup as well. If that doesn’t pan out, maybe contact neurologists? I don’t know. If anyone has a recommendation on this, please feel free to post. I’m all ears.

I think this is one of the reasons why B12 deficiency is commonly misdiagnosed or not caught at all. Testing for B12 is not a standard test done in a blood panel from my understanding.

B12 deficiency is a serious thing. It is frequently misdiagnosed for dementia, Alzheimer’s, MS (multiple sclerosis) and other disorders that cause permanent neurological damage. I would think a doctor who treats patients for these type of disorders, would rule out B12 deficiency before moving on with other treatments. I know there are other factors to consider and doctors have a big job of taking good care of their patients, but to me that would be the first thing to look at.

Pernicious anemia is a hereditary autoimmune disorder. My maternal great-grandmother suffered from Alzheimer’s, as well as my maternal great-aunt (both who have passed away), and now my maternal grandmother, who is still living. Both my mom and myself have been recently diagnosed with B12 deficiency and pernicious anemia. I seem to see a pattern here?!?

My next goal is to get my sweet Grandma Edna into a doctor who would be willing to test her and possibly treat her if it is such the case that she is deficient as well. I’m not sure what effect that would have on her in her stage of Alzheimer’s. I have not done any research or reading on that. Also next on the list. If anything, it might improve her quality of life and make her feel healthier and happier? It makes me sad to think that she may have suffered all those years, dealing with similar ailments and feeling the way I felt, and her doctors never considered testing or ruling out B12 deficiency. Especially when she started losing her memory and the dementia was prevalent. I don’t know if that’s true, but I hope to find out soon.

My experience has proven to me that we all need to be knowledgeable as possible about our health and not be passive. We don’t always get the best care from the medical community. Things are missed. They are human. But, in some instances, we have to fight tooth and nail every step of the way to even be treated correctly. Or even be treated at all.

This truth hit me hard after I spent the afternoon with a good friend of mine who has a 4-year old with cerebral palsy. We had lunch and then I went with them to an appointment at a local children’s care facility. She was telling me stories of several instances where her son’s OT therapist missed scheduled appointments at his school, with no rescheduling. Not just one or two; but 6 out of 8 of the last appointments – breach of contract. Of course the OT management heard about this in a loud way from my friend. She confessed she hated to be labeled as ‘that Mom’ who everyone cringes when they see her coming. But she hit the nail on the head when she said, “but If I don’t look out for him and micromanage every part of his life and health care, no one else will. No one else gives a damn.” I said, “amen sister!!!”

 

New Day – New Blog: My first Blog Post

As a newbie to the blogging world, I am a bit apprehensive but excited to be an ‘official blogger’. I will let you know when I actually embrace that title. But, as of right now, I feel like I’m about ready to cliff dive. Once you step off, there is no turning back; and you don’t know whether you are going to slice gracefully into the water or belly flop like there’s no tomorrow.

Either way, through much encouragement and feedback from family and friends, I’m excited to be on this adventure in the online writing world, and anticipating to see what the future holds.

This is my first blog posting for “The B12 Chronicles: Today Is A New Day”. If I could get past obsessing over the best title, you may have had a chance to read this blog much earlier than you are now. If you have any suggestions for a name that might be more relevant, I am all ears. I’m slowly learning; it may not be perfect, it’s a process.

Back in September, I was diagnosed with vitamin B12 deficiency and Pernicious Anemia, a hereditary autoimmune disorder. This is something that has changed my life immensely and I feel compelled to share my story to help other people who struggle with the same things and connect with people who have also experienced the repercussions of this vitamin deficiency.

As a direct result of discovering my B12 deficiency, my mom and brother took it upon themselves to get tested. Happily, my mom has discovered she has the same condition, and I am excited to be on the journey together with her to find healing. My brother however, was told he was not deficient, but through my research and reading, I’m keeping my eye on him as it may just not be as advanced.

To get a better idea of what is motivating me to write this blog,
you can read: My Story: B12 Deficiency & ‘The B12 Chronicles’
Or you can read more about me: About Me: Lisa M Johnson

Feel free to make comments or contact me; either logistically about the site or content.
I’m not claiming to be an expert (yet!) about the subject matter nor am I a doctor or have had medical training. I do however do a lot of reading and research and will only post confirmed factual information and my personal experiences.

Thanks for reading! Enjoy.
~Lisa