I have created this community where I will share everything about my disease Lupus and Lupus Nephritis, from how was the process of my diagnosis, treatments, diets, advice and many other things, there is a lot of misinformation on the internet about lupus, and in the places where there is verified information is very scarce.
In this first post I am going to share about my Diagnosis process.
A short introduction about lupus is that it has no origin or cure, it is an autoimmune disease, meaning the immune system itself attacks healthy cells and tissues by mistake. This can damage many parts of the body, including the joints, skin, kidneys, heart, lungs, blood vessels, and the brain.
cause of lupus?
Many scientists believe that lupus appears in response to a combination of factors, inside and outside the body, including:
1. hormones,
2. genetics,
3. environment.
MY DIAGNOSIS
For many years I have been having a number of strange symptoms, rash, muscle aches, fatigue, headaches, stress, depression, joint pains, stomach problems, and I never paid attention to any of my symptoms, I always thought that It was because of the lifestyle that I had or simply because of working a lot, or some unhealthy food, but in mid-2019 I began to have stronger and new symptoms,
first visit: (2019)
I started with a chronic pain in my stomach, and a rash all over my body, I was diagnosed with pityriasis rosea and a mild stomach infection.
ibuprofen medicine
second visit: (2020)
I had chronic pain in the lower stomach and cramps, vomiting and diarrhea, I was diagnosed with a cyst and the stomach pain was related to that.
ibuprofen medicine
third visit: (2021)
a small ball appeared in my stomach that sprung from my skin, and a chronic pain in my chest, I was diagnosed with a respiratory viral infection and a dumpling that would go away with time.
medicine "naproxen"
and this is where the worst begins
the third visit I made to the doctor, he prescribed me to take naproxen twice a day until finishing the treatment,
This literally made my kidneys and my stomach screw up.
I was in naproxen for two weeks, I have no idea how I was able to survive that and not having gone to the hospital before, just remembering those moments gives me anxiety, they were two very horrible weeks, where I felt completely weak, I could not breathe well , my head ached all day, I couldn't walk or move easily.
fourth visit: (2021)
I went to the hospital in the worst conditions, my blood level was 3.4 !!! I received blood transfusion twice and a lot of fluids to hydrate me.
I was diagnosed with:
ANEMIA
h pylori bacteria
and an ulcer in the stomach
They prescribed me two medicines and my body did not like it, 6 days after being on medicine I began to have new symptoms.
fifth visit: (2021)
After 6 days of medicine I started having vomiting, spitting blood, nausea and stomach pain.
the doctors just changed my medicine and sent me back home.
4 days after that I returned to the emergency room, not only with vomiting but now I had vomiting and chronic diarrhea.
And this is where it all begins, they did many many tests and everything was abnormal, they did not know where the problem came from, so the doctors only focused on keeping me safe until they knew what tests they could do to find the problem.
After three days of a lot of withholding fluids, serums, injections and blood samples, the doctors realize that my kidneys are screwed up.
this is a picture of my kidney function%
The doctors decided to do a biopsy to find out what the problem is, and during that time, they began to put together a puzzle with all the medical history that I have had, and they came to the conclusion that I may have lupus and possibly lupus nephritis (when it affects you the kidneys).
With the biopsy the doctors would ensure if I have lupus nephritis, but with the result of:
Complete blood count (CBC)
Erythrocyte sedimentation rate (ESR)
Urine analysis.
Blood chemistry.
Complement level test.
Antinuclear Antibody Test (ANA)
Anticardiolipin antibody test (blood clots)
it was already certain that I had LUPUS SLE
the biopsy result was positive for LUPUS NEPHRITIS.
we immediately started a treatment to save my kidneys,
I lost the hair from my eyebrows, eyelashes, my skin paler with marks and bruises, arms, legs, stomach and face swollen, body aches and many other things, I think the worst of the disease are the side effects of the medicines.
In this post I am not going to share about how lupus changes your lifestyle completely, but when I left the hospital I was so scared, I felt that I was not ready to leave and I didn't knew how I am going to live like this, or adapt myself to this for The rest of my life, always pending to be active or in remission, there are many things that I will never be able to do again, others that I have to take care of and others that I have to avoid, I had a lot of depression, and even more with the medicines.
I am currently taking 10 medications daily to treat lupus and lupus nephritis.
hoping to save my kidneys and not need a dialysis or transplant.
I have many appointments with doctors for the rest of the year, many more blood tests and a new endoscopy to see how my stomach is from the ulcer. hopefully no new biopsy (that shit scary).
I am very thankful with those people I love the most that are by my side in this hard moment.
this is the first pics I took of myself after having gained 15 pounds
something crazy about lupus is the weight gain, sometimes I will be swollen and other days too skinny, even if I eat healthy, is all about how by body will react to everything.
thanks for read.
Wow ... I didn't know much about Lupus, I had heard of it but never delved into it. I understand that feeling that happened to you once you got out of the doctor, it's something normal maybe because of all the process gone through and getting to the point where we hadn't imagined being. I suffered a similar process in which I almost died but thank God after many long nights I managed to overcome it.
Anyway, I can see that your spirit and soul are of strong character and that you can handle all the trials that come your way, perhaps this experience was a major process for a new beautiful stage of your life, I am sure that everything will be fine and you will have a speedy recovery. Blessings
I know, I didn’t knew anything about lupus until I got diagnosed, Thanks God I am in very good hands and all days learning about this, thanks for your sweet comment!!!
All I can say is please let’s be aware of our body !!
If we have health we have everything we need to do great in life🦋❤️
that's right 👏❤️
The information you gave about lupus has been very revealing. the human brain is an undiscovered area. Thank you.
Thanks for read !!!
My first time hearing this disease too.
I pray and wish you will be able to be cured the soonest.
Hopefully we can find the cure one day 💜 thanks for read !
It must have been so difficult for you!
Good that you are in good hands, I know Lupus, some family member of mine has it. Take care girl and all the best!
thank you so much!!!