My Pregnancy With Undiagnosed Lupus and Hashimoto’s was a horrible experience.
I’ve seen a few shared experiences of women pregnant with undiagnosed Hashimoto’s and Lupus. This one is mine, and like many others it is not good at all!
If you are pregnant and your health has tanked or you know you have lupus or Hashimoto’s or any other autoimmune disease and are being ignored be like me and keep pushing. If doctors are ignoring you keep pushing for help.
I know some nations are worse than others for getting proper care. But regardless do not give up. You and your baby deserve help and proper diagnosis and/or treatment. One doctor doesn’t care? Move on the the next. If they talk and gossip? remind them of their oath and keep moving on to the next rheumatologist, OBGYN, ER etc.
Our priorities as pregnant women are to deliver a healthy baby and doctors are legally obligated to respect that priority and it should also be theirs.
I have a legal battle from hell in front of me all this time later. But my child and I deserve justice and I am not going to shut up. I actually have doctors on my side and supportive of my decisions to take some doctors out legally.
My pregnancy was so difficult. And the suffering both of is did was totally avoidable and completely unnecessary.
My baby was planned but a little bit early as I tell people. My now ex and I wanted a baby and we planned to get to the bottom of things before we had a baby. We both knew something was wrong but neither of us knew what it was. And it was just common sense to want to get to the bottom of my health before having a baby.
I was finally starting to get better. I had doctors that were aware of previous experiences that were willing to figure things out if these symptoms came back. And it was only a matter of time I figured.
I loved where I was in life. I loved the country I lived in. I loved the house and neighbourhood I lived in. I used to sit in the shaded part of my upstairs terrace and listen to the sounds of nature. My neighbours rooster used to crow with an uncanny human like sound. I could see the fog descend over the mountains and rainforest view behind my home.
I found out we were pregnant there. My bedroom doors opened onto the terrace that had views of trees and I would wake up so happy yet so worried. I had a lot of stress as I was recovering still. I was very close to being finished with the latest health fiasco. But I was so exhausted I could find no words to even describe the intensity of it. But our baby was a blessing.
I had no idea at that time that I had more than one autoimmune disease. Like so many other people I thought it was stress at first. But ai had a symptoms of lupus since I was a teenager. But no flares until my thirties. And I had symptoms of thyroid in my twenties, but as I had mentioned before, who goes to a doctor and says, “Hey I am too skinny and I have too much energy to do all this work all the time, study, excretes and all the rest that busy people do.”
To me skinny and energy for days unable to sleep so working late or writing was just not on a complaint list. Especially when I had high rents, deadlines and goals.
But when I started having flares, like so many other women I did not know what they were, or anything about the diseases they represented.
Just as I was recovering after multiple surgeries I started becoming so exhausted. Again I made an excuse that I was recovering from something unrelated. I could breath and rashes were not appearing so I was free from past nightmares I thought.
My now ex started taking my exhaustion as not wanting him. I would sleep late and be tired and fatigue so easily. I felt as I my body worked harder to recover I got even more tired. Again I was not understating it was Hashimoto’s making me tired.
But it was like I was barely hanging on. I cried to him telling him I was so exhausted and I didn’t know why. I felt like I was dying inside just please stop thinking like this.
It created arguments because he was not understanding the seriousness of it. And I do know the average person that has not experienced it cannot understand it. I would defend myself but I also walked away saying I’m done I’m not arguing.
Yet at the same time he was everything I could have wanted. How confusing. He would rub my back to try to relax me because I had such horrible pain in my back, muscles and some of my joints. I always got terrible headaches since I was a teen here and there, but he would rub my head to help ease the pain.
He like a lot of men and was a really good cook which came in handy. I used to soooo appreciate him.
These were my first in my face Hashimoto’s symptoms. My flares were my in may face lupus symptoms. But what does that matter when most people have no clue what lupus is or Hashimoto’s? I don’t think most people even know what autoimmune disease actually is unless they have a relative or are diagnosed themselves.
So how does a person even try to figure it out? I tried but ended up just hoping for the best and eventually getting answers.
I had to leave my home temporarily to keep my status legal until I was an actual resident or citizen. As I mentioned in a previous post I visited my “mother.” And I figured while I was in that country I would do my prenatal testing. I figured at the time I was eight weeks. By the time I got to my mothers I was ten weeks.
I planned on going back home though I wasn’t sure where I wanted to have the baby. I was thinking of legal things and what would be most beneficial for my baby not me.
Turns out what was most beneficial for the baby was not regarded by doctors in nation where my mother was. (If you want to read about the beginning of the end of life as I knew it you can read that post here)
As most people with lupus and Hashimoto’s know when you’re tailspinning with these things and not treated or diagnosed, you tend to have a ton of infections because your body is fighting itself not infections and things it should be fighting.
After the first moron that had MD in her title started a bad trail of cause an effect, I ended up in emergency rooms and met even more of her incompetent colleagues that seemed to picked up where she left off. They seemed to be intent on finishing any of the damage she created and going a step further.
I knew something was seriously wrong with my health. To be honest my health was just as bad and awful as the average person that lived in my mothers part of the world.
I was recovering from an infection that is kind of normal in central america but preventable if you know you have autoimmune disease and avoid certain things. I was so close to being done. But it got worse when doctors ignored it at my mothers. I will share some of my medical documents in others posts.
First no one was competent enough to deal with something as simple as asthma. Technically as dangerous as it is it is extremely common unfortunately and it is no stranger to doctors in any stretch of the imagination.
I guess that was my first sign that I was not going to survive so easily and would have to fight for my unborn baby’s life and mine.
Not one physician listened to my symptoms. Not one did any thyroid tests. Not one felt my thyroid. Not one understood lupus symptoms. And not one cared to even figure it our.
Not one doctor even cared about my planned baby’s wellbeing. NOT ONE!
I had respiratory distress from asthma ignored, severe exhaustion, severe kidney pain that started as UTI that moved extremely fast. UTI’s are no stranger to my life. Severe weakness and heart palpitations were only some of my symptoms. I had hair loss and lupus hair which would actually be noticeable to a real MD and flagged with all those symptoms.
I had a right to a pregnancy with proper health care. I had a right to keep my baby alive and know my baby was safe during my pregnancy. I had a right to diagnosis. I had a right as an expectant mother to get at least some type of care to stabilize me so I could go home as soon as possible. I had a right to be stabilized to safely board a plane.
I had a right to get back home to doctors that listened and were willing to help me get to the bottom when I had what I would later understand was a flare. I had a right to prepare my babies nursery and rub my bely with joy and expectation.
Just not here. How dare I demand human rights. And how dare I pull legal and get them that way!
I ended up being rolled into emergency surgery when they finally took my kidneys seriously after I pulled legal route with help of and outsider, and realized that the lady that was not a drug addict and did not look like one or behave like one. The one that did not want narcotics because I reminded the doctors I was pregnant and did not want them in my baby’s system was rolled into emergency surgery at four months pregnant.
The sad thing is when women are diagnosed with these things doctors in civilized nations know these diseases are dangerous to both mother and child and are hands on with the prenatal care to keep both baby and mom safe.
This is one of the reasons my ex and I wanted to wait to figure out what was going on before we conceived. But we had no idea that it was so serious! But the baby was a blessing even if early, and I can’t figure out why doctors would expect me to not care about my child or prepare for my child like mothers do.
And what made them think I deserved to or wanted to be here or have anything to do with their society? I wasn’t even a resident of my mothers location. I was completely baffled why they thought this was acceptable. And completely amazed this is normal in that area.
It’s not a typical hard to peg diagnosis, I get it, but it wasn’t that hard if doctors listened to me and did what they are legally obligated to do in civilized nations.
It was a criminal system that knew they would get paid and without working or ethics and was not necessary what we had to endure. It wasn’t even a case of typical autoimmune diagnosis difficulty. Just arrogance, ignorance, and unprofessionalism.
I will finish my pregnancy experience in other posts.