The Mountain Out Of The Mole Hill
But wait, Emily, you said AIP helped you, but now you are worse. There is some disconnect.
Yea, I know right. What is that about? Well, I had the opportunity to carry the miracle of life and my body decided, it’s not the vibes. Sjogren’s syndrome was the least of my worries during my pregnancy, until it decided to turn my life upside down.
No One Saw This Coming…
Once I hit about 10 weeks, I had a new and exciting symptom to look forward to every week. My pregnancy was a roller coaster to say the least, until the emergency brakes were activated at 26 weeks. Our beautiful Renée Bernadine came into this world rocking and rolling at a mere 26+3. She weighed 1lb 1oz and was 11 ¼ inches long.
Sweet potato needs a whole blog dedicated to her strength and resiliency, so I will save her story for a special spotlight.
Spoiler Alert: this is her dedicated Facebook Page.
Here are just a few things that happened to me peri and post partum:
Y’all I thought I had a fungal infection! I was like this is disgusting, how does this happen? Turns out it was, you guessed it, an inflammatory response! I had these semi-circle spots all over me. They looked like ring worm. It was in very strange places and was like whack a mole. As soon as one went away, another showed up. This would soon be the least of my worries though. I treated it topically with a steroid cream before it transformed into the next symptom.
I had significant swelling in my legs once I entered my second trimester. It literally showed up out of nowhere. I remember being at work one day thinking, gosh my legs feel really heavy. Then I picked up my pants leg and noticed 2+ edema (significant swelling) in my calves and ankles! I wore full compression stockings to work and still gained about 15 extra pounds of fluid. It was ridiculous.
This is fancy for protein in the urine. Like a ridiculous amount of protein in the urine. It was so excessive, my albumin (the protein in your blood) was less than 1. For reference, normal is 3.4 – 5.4. I had basically no protein in my body. Looking back at all of this now, I don’t know how I was even standing. I remember my doctor telling me usually people with these lab numbers are in ICU. Now these last 2 symptoms may sound very familiar…they are both signs of preeclampsia. I had all the symptoms of preeclampsia without the blood pressure issues. I’d later find out I developed another, wait for it…RARE kidney disease called FSGS and nephrotic syndrome.
Now this is a common staple expected with Sjogren’s syndrome. Mine was out of control. My eyes were constantly red, swollen, and so dry. I had to stop wearing makeup. The sun and fluorescent lights were almost blinding. Some days it was so bad, I had to run in the hallway and put a moist hot pack on my eyes for a few minutes in between patients. I was scheduled to have plugs put in my eyes to help with this situation. However, Renee had other plans and I never made it to that appointment.
Now this one I don’t take credit for. I firmly believe this was induced by the ridiculous dose of steroids I had to take to get my body to somewhat calm down. I was so upset when I failed my glucose test. I already was experiencing a high risk, abnormal pregnancy. I just wanted to fulfill all of the food cravings while I could!
Turns out I had been WORKING and WALKING around with blood clots in my lungs without even knowing. Thanks to my “it’s just your autoimmune flare” symptoms, I had no idea my shortness of breath was a severe blood clot that nearly killed me. After I delivered, I was still overcoming my kidney disease until I could have a biopsy to determine the exact diagnosis and treatment. My legs were incredibly swollen and my shortness of breath was coming back. I didn’t know any better and attributed it to my lack of physical activity in 3 months in conjunction with my super heavy and swollen legs. Well things took a turn for the worse, and I ended up in the ER with a massive blood clot in my left lung and HEART! I’m lucky to be alive y’all.
Pulmonary Arterial Hypertension/CTEPH
Okay, enough is enough. How many more diagnoses and life changing events can happen in one year? I think this was absolutely the worst. However, with that being said I am thankful for the diagnosis. It is a death sentence without treatment. Pulmonary hypertension means that the lining of the arteries of the lungs are narrowing – could be from scarred clots or guess what, autoimmune disease! Turns out, no one can figure out the exact cause of mine! Here is another rare diagnosis with no clear root cause.
Anyways, your heart has to work extra hard to pump blood into the lungs because of narrowed arteries creating high pressures. This can lead to right heart failure, which I’m at the brink. This diagnosis was likely prevalent before I even became pregnant, I just never made it into the right hands for someone to recognize it. However, if I was diagnosed earlier, I would have never had Renee…
My Head Is Spinning
I think that is everything, I don’t know. I can’t keep up anymore. Everything happened so fast. These symptoms weren’t dragged on for weeks for months. They literally showed up all within 4-6 weeks and before I knew it Renee had to be born.
Some days I am very motivated to stay on top of everything and keep it organized. Other days, I wish I was 10 again and someone would just take care of everything for me.
Just kidding, I am way too proud for that. For some reason I can’t ask for help, and may be partially in denial about the severity of my illnesses. I just had a wild and crazy year, I haven’t had the time to slow down and realize what had actually just happened.
Believe it or not, this is only what happened to me. Check out part 2 to see what happened to Renee and the guilt that took me a long time to overcome.
Looking Back While Moving Forward
Why am I telling you all of this? I don’t want pity, I don’t want you to feel sorry for me. I want to prevent it from happening to someone else! I want to help you whether that be through education or coping. If I could save someone from going through what I went through, then I have reached my goals.
I was a first time mom, I didn’t know what was normal and what wasn’t. Pregnancy makes everyone tired and swollen, right? I did literally everything every doctor had asked me to do. I even gave up coffee! Hindsight is 2020 and it’s easy to say now, “oh, I could have done this and that.” But could I? Would it have really made a difference? If I knew then what I know now, Renee probably would have never been a part of my life. Women with PAH can’t have children, it could literally kill them if that news wasn’t devastating enough.
Soap Box Rant
Maybe it’s just me being naïve, but pregnancy needs to be taken more seriously in our healthcare system. This is a miraculous, beautiful blessing. Our bodies literally create another human being from scratch. Why is it accepted as such an ordinary, everyday experience?
Why are we still forced to work day in and out, and be worried about how we are going to cover our all too short maternity leave? Why aren’t we given more education, support, and resources? Why aren’t our health concerns taken more seriously? Women are strong willed and indestructible, that is why. We push through anything and everything. We are invincible, is that a reason to fall through the cracks?