June 10 2023
It’s B-12 shot day. I’ve been doing it myself for about 6 months now. When I think about how I felt this time last year, 2 and 3 years ago; it makes me shudder.
Now that I’m healthy and so many other factors have shifted, I’m grabbing life by the hand and dancing until my music ends (or until I can no longer move 🤣). 💋❤️💋
August 27 2022
I cannot believe what I had accepted as my new normal over the past few years. I didn’t feel like I had the time, the energy, or the brain capacity to figure out what my issue was. My personality type is just keep going, no matter what.
To say I feel much better is an understatement. Two weeks ago I received a B12 injection every day for a week, plus a 3 hour long iron infusion (as I also had iron deficiency anemia). I had one shot last week (yesterday) and will have one a week through mid-October, then switching to once a month.
Pre-diagnosis it had gotten to the point that I could barely do anything. I forced myself to do the bare minimum, especially the last 6 months. My hand strength had gotten very weak, my feet hurt, my hands hurt, everything hurt, severe brain fog, I was having difficulty with word recall (couldn’t remember the word for things in conversation), I was out of breath after doing the slightest task, light headed.
Last week I had a 20 minute dance session every day, went for a 30 minute swim every day, took Thomas back and forth to TMCC 18 times, went to back to school night at TMCC, volunteered at the library with Lillian, ran many errands, and did not get light headed or out of breath one time. My hand strength has returned, almost everything that was hurting or bothering me has stopped. I may stil have a GI issue and a neck issue, but those are feeling better, too. I will give that some time.
It’s hard to describe what if feels like to feel like yourself again, after many years of not feeling like yourself. I’m extremely excited, happy, motivated, and I wanted to share this with all of you. xoxo
Here’s a great 3 minute video about pernicious anemia:
More information: This from the Pernicious Anaemia Society
Pernicious Anaemia
People who have been diagnosed as having Pernicious Anaemia will be unable to absorb Vitamin B12 from food.4 Until the 1920’s when it was discovered that feeding patients raw, or very lightly cooked liver could keep them alive patients died from the disease. Injectable ‘artificial’ B12 became available after the Second World War and now, as long as the diagnosis is made, people seldom die of the disease. Once the Vitamin B12 Deficiency is corrected patients can live a more or less normal life. However, a great many people still have problems with symptoms after the deficiency has been corrected though doctors don’t know why this is so. When a patient has been treated with replacement therapy B12 then he or she should have their anaemia corrected and therefore will not have any anaemia that will prove ‘pernicious’ (fatal). So therefore they will not have Pernicious Anaemia any more. But the fact is that they will need replacement therapy B12, preferably in a form that by-passes their stomach, for life. They will always need B12 and their treatment should never be stopped. Here’s what the latest Guidelines from the British Committee for Standards in Haematology state:
(testing positive for Intrinsic Factor Antibodies)…
identifies those with a need for lifelong cobalamin replacement therapy.
Cobalamin is the scientific name for B12. Whilst B12 will correct a patient’s anaemia and therefore save his or her life, the patient will still have Autoimmune Metaplastic Atrophic Gastritis (AMAG) and so perhaps it is time to replace the diagnosis of Pernicious Anaemia with this more accurate description of their condition. Note whilst AMAG (or Pernicious Anaemia) can be treated, there is no cure for the condition yet.
Blessings,
Camilla
See It. Share It. BE IT … Spread Love Everywhere You Go!
“Words of Alchemy”, published December 2019, is a free-verse poetry memoir covering the last 6 years of my life. The poetry of nature, the poetry of healing, the poetry of appreciation, the poetry of love, in one beautiful book.
Amazing news! My 21 year old daughter, Lillian Darnell’s debut book, “Where Would You Fly and Other Magical Stories” was published January 2018. Learn more and order here.
Wonderfully exciting news! My 16 year old son, Thomas Darnell‘s book, Biggest Little Photographer is published. Be inspired! Learn more and order here.
August 17 2022
I’ve not been posting as much as I did in the past. I’ve not been writing, not keeping up with my favorite fb groups, and haven’t even been able to go for walks since June. I have been utterly drained and exhausted for the past few years, with it getting progressively worse.
For the past year and a half I’ve been traveling a path of lab visits, MRIs, CT Scans, ultrasounds, colonoscopy, endoscopy, an EKG, visits with the GI doctor, heart doctor, and now a hematologist. I’m thinking the (hopefully) last stop will be a neurologist.
About a year and a half ago I visited the doctor with a list of symptoms, and asked her to please help me figure out what the hell is going on. I knew I did not feel like myself, with a drastic change in my energy level. I had been feeling like this since mid 2019.
Pernicious anemia (a B12 deficiency) and iron deficiency anemia – that’s where I’ve landed, and I’m hoping when this is addressed it will address all of my symptoms. I do not like the hematologist, or where he practices, so I’m most likely going to seek a second opinion. Or at least a doctor who is interested in discussing the diagnosis with me and educating me. Once I find another doctor, this current place can pack it! 🤬🖕🤬
It’s looking like I will require monthly B12 injections for the rest of my life. I’ve been telling the doctors that I felt like I was dying, my legs felt like lead, with me consciously having to tell myself to move them when walking! It turns out when half your red blood cells are misshaped and messed up, you do feel like your dying!
I’ve been getting B12 injections all week, with an iron infusion coming tomorrow. I’m already feeling a little better, and just know by next week, I’ll be on my way to feeling like myself again. After this week, I’ll have weekly B12 injections, and then eventually monthly.
Definition from National Organization of Rare Diseases – Pernicious anemia is a rare blood disorder characterized by the inability of the body to properly utilize vitamin B12, which is essential for the development of red blood cells. Most cases result from the lack of the gastric protein known as intrinsic factor, without which vitamin B12 cannot be absorbed.
Thank you to an astute, compassionate GI Nurse Practitioner, and Cardiologist. The GI Nurse Practitioner is the one who ordered extensive labs to include many conditions. They both encouraged me to advocate for myself, encouraging me to stay on top of advocating until I made my way to the hematologist.
I’m sharing now to encourage anyone else in the midst of advocating for themselves. If something doesn’t feel right with your body, your health has drastically changed, find those specialists who HEAR you, and encourage you to stand your ground. I feel you, and I see you.
August 20 2022
Today was the first time in a very long time that I did not have to rest after having my shower. Yes! For the past couple of years, I had to sit down and rest for about 15 minutes as I was out of breath and light headed.
I’m finished with the daily B12 injections, and the iron infusion. Can I be Iron Woman now? On to weekly B12 injections next week.
A bit more about Pernicious Anemia from The Cleveland Clinic:
What is pernicious anemia?
Pernicious (per-nish-uhs) anemia, one of the causes of vitamin B12 deficiency, is an autoimmune condition that prevents your body from absorbing vitamin B12. Without adequate vitamin B12, you have fewer red blood cells carrying oxygen throughout your body. You can have pernicious anemia for several years before noticing changes in your body. Left untreated, pernicious anemia can cause serious medical issues, including irreversible damage to your nervous system. Healthcare providers treat pernicious anemia by prescribing vitamin B12 supplements.
August 25 2022
I am feeling so much better, with more energy than I’ve had in a very long time. I’ve danced every day this week, gone for a swim every day, and it is wonderful.
I’m still having issues with my GI; which is why I was seeing the GI to begin with. Hopefully we’ll get those sorted out soon. Whew!
Hallelujah!
Blessings,
Camilla
See It. Share It. BE IT … Spread Love Everywhere You Go!
“Words of Alchemy”, published December 2019, is a free-verse poetry memoir covering the last 6 years of my life. The poetry of nature, the poetry of healing, the poetry of appreciation, the poetry of love, in one beautiful book.
Amazing news! My 20 year old daughter, Lillian Darnell’s debut book, “Where Would You Fly and Other Magical Stories” was published January 2018. Learn more and order here.
Wonderfully exciting news! My 16 year old son, Thomas Darnell‘s book, Biggest Little Photographer is published. Be inspired! Learn more and order here.