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!
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“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.