Before I get started I want to say I am not a doctor. I had nurses studies in high school and college and much later in life became a Vet Tech. What I write here is from years of studying to learn more about the dis-eases I live with.
The basics of Autoimmune,(AI)
AI disease happens when the body’s natural defense system can’t tell the difference between your own cells and foreign cells, causing the body to mistakenly attack normal cells.
There are more than 100 types of AI diseases that affect a wide range of body parts. I have done extensive research on AI and I will not go into the science of it all because, "they" still don't have all the answers for any AI. However, AI runs in families, and strikes women more than men. 80% of those with AI tend to be girls and women. I believe that genes and hormones are, in part, responsible for AI unless one contracts AI through pregnancy, environment, or from medications. It is proven that once these things change the AI effects disappear. I do know that in the 1940s AI was being looked at and in the 1950s Paul Ehrlich coined the term “horror autotoxicus” to emphasize the pathogenesis of autoimmunity and how the immune system distinguishes “foreign” from “self.
The medical field does move slowly and many doctors didn't believe in certain AI until the 1990s and even then the belief was that women were faking it for attention, pre or menopausal and it didn't count, or we were just crazy and needed to be sedated or place in a sanitarium. I was accused of all of the above. But I am getting ahead of myself.
For me lupus started as a baby. I would cry and grab at my head. The doctor then said I was having headaches. Remember, that doctors in the early 1950s did everything from casting a broken bone to delivering the babies. Doctor Bosco was our doctor. By the age of 4 or 5 I was having full on migraines and they have lasted until today. School was very difficult for me. I was also dyslexic. Again during the 1950s and 60s teachers were brutal on kids with this disorder. I was no exception. Sunlight was and is my enemy and I would often pass out in school if the bright sun hit my eyes just right. No one could tell my mom what was wrong with me. I was given all kinds of meds to stop the migraines but nothing really worked. All through my life I have had major internal organ problems. The doctors just removed them and called it a day. No one ever tried to find out why. Coping and taking care of one symptom at a time is what most of us get. Sometime in my 40s I woke up and my left eye was drooping. This is called ptosis. It was so strange because I felt fine. I had my eye looked at for palsy and stroke. Nope, not those. Three weeks later it all hit me. I had a women doctor that did my first lupus blood work and found I was positive for it. From there the hell started. I was sent to a rheumatologist and put on 3 different medications including an antidepressant and prednisone. The side effects were worse than the lupus. For the next 2 years, due to medications, I lost the ability to speak, walk, had seizures everyday, was in a state of hallucinations, oh, and lost all of my hair. I was told I didn't have lupus but was epileptic. At that time 2 masses were found on my brain. Neurologist added more meds. I fought them, told them the meds are making me sick, that I can't be taken off one medication and given a new one in a course of a day. I had every test known to woman kind, with some interesting findings but I was still considered crazy. By this time I didn't know myself and had to be cared for like a 90 year old. I truly thought I was dying. In a moment of clarity. I signed, property, our home, and everything else over to Mr. M. Also at that time I sent him to the herb store with a list of cleansing herbs. These @#$#$%$%^ doctors were not going to kill me with their meds. Slowly Mr. M. started to take me off of the meds and fed me herbal teas. Some of the meds were quick to leave my system some took longer, about a year. But once I had my senses back I stormed into doctors offices without appts and read each one them a riot act and fired them. That's when I started research on lupus and how to control it with herbs, vitamins and minerals.
This post has taken a different path than I thought it would and is quite long. I am going to stop here and finish it tomorrow.
If you have read all of this, I thank you.
Even though horrible details have been left out I hope you get the idea of what a lot of women and men go through to be diagnosed. It usually takes 5 years.
See you tomorrow
Bravo! Thank you for sharing your journey! Prayers for your health
A coworker showed me a magazine article about fibromyalgia. My doctor knew zero about it. Going through the testing to have the bona fide diagnosis took time.
It is amazing how little primary care knows and of course will send you to a "specialist" I hope you have a good doctor and are well.
What a journey! So glad you found a herbal path and were able to fire those doctors!
We all survey our illnesses and could get medical degrees over what we learn. You sound like a doctor for sure only a lot easier to understand. Bless your heart.
sending Hugs I use herbs on myself too
I’m so sorry for what you’ve endured. I have PMR and RA (and supposedly fibromyalgia, but I’m not convinced on that one). It’s a sh*t show that’s for sure.
YEs, life with an auto immune disease is a constant fight, and I never knw what the next day will bring! Stay as well as you can, hugs, Valerie
wow meds are certainly not always the answer wow. Thanks for sharing a bit of your touch journey Nicole.
Dear Nicole your story melts my heart!
This is terrifying how much you went through since childhood. Honestly I had no idea if this kind of disease existed. And worse par that people can inherit it.
I felt terrible what medication made you feel and what a grace of good Lord that after suffering he enlightened you to take over your life and take care of yourself the way you want to.
I am impressed by your strength and brvery and how you transformed your life with your extraordinary surviving skills!
Nature love fighters like you my wonderful amazing friend!
I did not find post long at all. As I was captured by details absolutely.
I will be back to know more my friend.
I am su that wi t help of God you will be able to make way out of all this!
Hugs love and blessings
I had migraines, too, acupuncture luckily helped!
They removed organs?!
Medication can be horrible. I got antidepressants, too, despite I explained I don´t need them - learned my lesson.
Hair-loss etc, too.
You have quite a journey there.
Think much is just about making money...
Hope this time you found a better one! Big hugs.
Bravo to you for being proactive with my medical care ~ Xo
Wishing you good health, laughter and love in your days,
A ShutterBug Explores,
aka (A Creative Harbor)
An awful journey Nicole. So much in medicine is a mystery. We all have to advocate for ourselves. You keep going, girl.
You've been through a lot- I'm glad you are finding ways to deal with Lupus without medication. Hugs, Chrisx
I've had fibro for about 25 years and was diagnosed about 20 years ago. Had it so bad (plus some other health issues) that I was on disability and housebound because I couldn't function enough to work anymore back on 2005. I sent years making my own decisions on not taking medications--learning about trusting my body and that you can't count on the doctors. Side effects of many drugs are worse than living with the pain.
Then--I got cancer--diagnosed June 2021. Even though I already had an autoimmune disease the doctors seem to be perplexed that I have had "abnormal" reactions to cancer treatments. Chemo--it was extreme. Then immunotherapy--that can make your immune system attack good normal cells. Duh! And they seem perplexed I have such odd side effects and not at the times they find appropriate or normal when or if other people have gotten them. Duh! This is why I am switching health provider systems right now. Tired of fighting the system and having to be my own advocate (lucky I have Leah to back me up with doctors).
So far--new place--they are already a bit taken aback by my brand new shingles out of the blue...haven't even met my new oncologist yet!! Fingers crossed I can find better cancer doctors here since there are more of them. Therefore, I can relate...even though I have not gone through anything as torturous or for as long as you have. I have experienced to some small degree some of the treatment you have had from the medical community. And the frustration of falling through the cracks as they say and not being heard. Thank you for telling your story. My heart goes out to you. *love and hugs* from Fargo, dear one.
I know that in the 1960s teachers were not able to deal with dyslexic kids.
Thank you for the explaination about bloody's natural defense system. Mr. M. was really great, as he started to take you off of the meds :-) great to hear you are dealing with Lupus without medication.
Go girl, go :-)
This life journey is not uncommon. After reading your stories, I realise your doctors run on "evidence proven therapy" as a checklist without clinical appropriation. That is common. After all, it is a job earning cash I guess. Sometimes "do no harm" shall be the priority no matter how the big pharma have marketed these drugs
Boa noite de quarta-feira minha querida amiga Nicole. Seu relato é muito forte e obrigado por divulgar. Espero que Deus abençoe a sua saúde todos os dias. Grande abraço do seu amigo Brasileiro.
I understand your frustration with some of the medical profession. Mom had one doctor (I use that term loosely) tell her she didn't need Metformin for her diabetes anymore because her blood sugar was normal. -- I mean sure it was while she was taking the medicine - that is what it is supposed to do!
Her blood glucose was reading very high, I took her to a good MD who has helped keep all her medical conditions at bay. But I will tell you, it is getting harder to find a good practitioner.
...some doctors are deaf.
This is a very interesting post Nicole. I have AI thyroid disease and also AI chronic hives. My husband had a rare AI disease that wiped out his kidneys. He has had a transplant since then. AI is scary and medicine doesn't take care of it, as I know from my hives. I have often thought of getting off of my hive medications, and when I was sent to a super specialist, and she recommended some heavy duty meds, I said no thank you. I'll stick with my basic meds thank you. Thank you for this post, and I look forward to reading tomorrow's post. hugs-Erika
Your story is quite poignant. I also have Lupus, at least I was diagnosed with it. I was also born with a rare form of arthritis. I have NO calcium around my joints, so as they rub together, they deteriorate. I am so glad you shared a brief part of your trials and tribulations dealing with your autoimmune disease and how you are handling it.
It's always good to do your own research and become as informed as possible.
I am sorry to hear this Elizabeth. Do you have Calcium pyrophosphate deposition? I knew one person with that and it was extremely painful. RA, and other forms of arthritis are "cousins" to lupus. So I am not surprised you were diagnosed with it.
Ohhh so you have Hashimoto's disease? If so hives are a condition of this. I am so sorry you share this with you body. As you know I agree with not taking the meds. I wonder if there is something natural to help with the hives.
OMG. Type 1 diabetes runs in the men in my family. Yes, doctors are harder to find and good one even more difficult.
Obrigado meu querido amigo. Eu aceito a bênção.
I couldn't have said it better.
Thanks Giorgio. yes, Mr. M. is pretty great.
Rita, I am truly sorry for all that you have and are going through. You are a true warrior.
Thank you Chris.
I am so glad acupunture worked for you.
Thank my dear friend.
Thank you Christine
PMR and RA is a horrible combination. Blessing to you Michelle.
You are so sweet.
I'm so sorry to read all of the horrors you have gone through at the hands of doctors. In a much smaller way, I have recently been going through way too many doctor's visits with no solid results and being put on steroids-all for no real resolve- just an "We don't know." I was tested for all the things they can test for in your blood-all negative. And was also told that one topical steroid I was on-that it didn't really affect me-that it was all in my head. I told him it made me sick-just like the oral steroids did. And I also sympathize with you feeling like you were dying-it's a helpless feeling when no one can give you real answers... I will keep praying for you!
This is fascinating. And yes, grim. I will look forward to learning more with the next installment. Well done, with your research and your advocacy.
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