‘I can’t live like this.’ My ovaries were the size of softballs, leaking fluid into my abdomen. My family needed me. I had to fight.’: POTS warrior shares motherhood journey, ‘You’re NOT alone’

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“Our journey to have a family has been very difficult but full of miracles. We are constantly learning we need to keep moving forward even when things are hard, even when we are not sure what the next step is or what it will bring. When one door closes, we must keep walking until we find the next open window. God cannot guide our footsteps when we are not trying to walk.

When we got married, my husband and I both wanted a big family so we tried for a pregnancy right away. Months went by. More than a year went by. We knew something wasn’t right and after 2 years, I visited a doctor who set up a plan for us that would take months of medications. I was devastated. This was going to be harder and take longer than I thought. But finally, after 2 and a half years, I got the call I was pregnant. I was ecstatic and the nurse on the other end of the line couldn’t understand what the big deal was, as I kept asking her if she was sure! I experienced complications during the pregnancy and delivery, but it was manageable, and we were so happy to finally start our family.

Courtesy of Rick and Mallorie Norman

About a year later, we met with doctors to start trying for our second child. We had hopes we could just use the same medication regimen, but we also knew it could take years to be successful. Months of medical treatment only brought bitter disappointment. We knew we had to try something else and moved to artificial insemination. After our third round, we were so drained and felt utterly defeated. I remember laying on the table, waiting for the procedure to be finished, just staring at the ceiling, with no hope of the treatment working. And it didn’t. We were devastated and broken. We were in the middle of a job change and a move. The medical bills were starting to pile up. Our hopes were being shattered. We felt so lost, shed so many tears, and it was hard to focus on anything else. I just wanted God to make things work out. We had tried for so long and done so much. Why were we going through this?

We wondered what we should do next and how we could keep going. We prayed for strength and direction. We knew that we couldn’t just give up. We started considering adoption but didn’t feel it was the right time for us to pursue it. We knew we had to keep moving forward somehow – we had to do everything we could so we could either fulfill our dreams for our family or so we could move on knowing we had done all we could.

Courtesy of Rick and Mallorie Norman

I started appointments with an infertility clinic and began treatments of various pills, shots, and three additional rounds of artificial insemination, hoping that a better clinic or a specialized doctor would change the outcome. But in the end, it all failed. We knew we had exhausted every option but in vitro fertilization (IVF), which was very expensive and very invasive. But we knew we had to keep moving forward and we plunged in headfirst. I had learned even if I was overwhelmed and couldn’t figure out the next several steps, I could at least have the courage to take the very next small step.

I underwent months of medications and shots, then had the egg retrieval procedure. We were blessed with strong embryos and one was transferred to my uterus within a few days. We waited and prayed. Because of the stimulation of my ovaries for the eggs, they were the size of softballs and leaking fluid into my abdomen. I was put on bed rest before we even knew if I was pregnant or not. When we finally got the call we were expecting, again we were elated! It had taken 22 months, but we were successful! We were grateful that we had not given up, we had kept moving forward. Very early on in the pregnancy, I experienced bleeding and an ultrasound revealed a hemorrhage right next to the baby and we feared miscarriage. I spent the entire pregnancy on bed rest, but we hoped and prayed for a good outcome. Toward the end of the pregnancy, I developed extremely high blood pressure, which necessitated an emergency c-section to take my son early. But that day was one of the sweetest and everything we had been through didn’t matter anymore.

Courtesy of Rick and Mallorie Norman

A year and a half later, we decided to do a frozen embryo transfer for our third child. I began having daily shots to prepare. I felt achy and a little under the weather but didn’t think much about it. The day we found out I was pregnant, I didn’t feel very well but was just so grateful we didn’t have to spend years doing various treatments before we could continue to build our family. Everything seemed fine until about a month and a half into the pregnancy. My husband was giving me my nightly shot and I experienced a weird taste in my mouth. I felt like I was choking, and it was hard to breathe. Everything seemed to spin, and I had to lay down. It took me some time to recover but I was okay, and we thought it was a fluke. I had already been doing the shot for a couple of months and had done it during my last pregnancy to help prevent the loss of our child. We thought maybe my husband had accidentally gotten it into my bloodstream. But the next night, the result was the same. I knew I was having some sort of reaction to the shot.

My doctor said an allergic reaction to the shot was unheard of, but he tried various formulations for my sake. In the end, I was told I either had to keep taking it or risk losing my baby. So we kept on. Each night was a nightmare. I would try to be calm but knew seconds after the injection, I would be so sick. It started taking longer and longer for me to recover and I started just going to bed for the night right afterward to deal with it. We were looking forward to the second trimester when we could stop the medication. But I wasn’t the same even after stopping it. I often felt dizzy and lightheaded. I would have what I called ‘chemical episodes’ where I was fine but then I would feel a burning sensation through my face and could taste and smell some sort of chemical in my throat. It made me disoriented and sick. I would have to wait for it to pass and then had to lay down to recover. The time I was down became greater and greater until I was down for hours at a time and finally, all day every day.

Courtesy of Rick and Mallorie Norman

I went to several doctors and had a myriad of tests run. Some thought it was all in my head, some chalked it up to being pregnant, others told me I could have a brain tumor or an adrenal tumor. We kept pushing and taking different routes until finally, after 3 months, a neurologist diagnosed me with Postural Orthostatic Tachycardia Syndrome or POTS for short. POTS is a form of dysautonomia (which is when your autonomic nervous system malfunctions). In short, my body couldn’t regulate itself. My blood pressure dropped dramatically, and my heart rate skyrocketed every time I stood up, making me feel like I was passing out. I felt relieved to have a name for what was happening to me, but the doctor wasn’t sure it was the only thing wrong with me and it was just the beginning of learning how to deal with it.

I started some medications, wore medical compression stockings, drank a serious amount of electrolyte fluids, and ate a lot of salt to get my blood pressure to come up. Other interventions, tests, and doctors would have to wait until after I delivered the baby. Until then, I would just have to do my best to deal with it. Despite having some direction, I continued to go downhill. If I stood up for very long, I felt like I was going to either throw up or pass out or both. Even sitting up became a chore. I had a hard time breathing and it was hard to eat and sometimes talk. I had to crawl on my hands and knees to get around my house and spent my days on the floor or the couch with my head down and my feet up. My husband had to help me bathe. I couldn’t even sit up long enough to do my hair or makeup. I had dear friends coming every single day to help me and my kids. Every day was a battle. Especially mornings. It felt like morning sickness, motion sickness, and the flu combined. Every. Single. Day.

Courtesy of Rick and Mallorie Norman

When I finally got to go outside again, I sobbed as we drove down the street. I was thrilled to see the mountains, the blue sky, the snow, the clouds, and even the cows on the side of the road! It was that bad! An amazing friend found a wheelchair to help me get out of the house more. That opened so many doors for me! We spent a lot of time outside letting the kids run and play and getting some fresh air for our sanity as a family. We went for many walks together with my husband pushing my wheelchair while I pushed a stroller with one of our children and the other child sitting on my lap. I would lay on a blanket on the grass at home or at a park while my husband would run around and play with the kids.

I knew I had to fight to get better. I couldn’t live like this forever. My family needed me. 25% of POTS patients become disabled because it is so hard to combat. When I was first diagnosed, I was told I should start recumbent biking or swimming in addition to strength training. This seemed impossible to me. I had been bedridden and couldn’t stand for very long. I was told to start with simple isometric exercises of squeezing my muscles while I was laying down. How was that supposed to change anything? I was sent to a physical therapist and given a packet of exercises to do, but at 7 and a half months pregnant, I was limited in what I could do. We didn’t have a recumbent exercise bike, so I tried going to a gym. But getting up, getting dressed, putting my wheelchair in the car, driving over to the gym, getting out of my car, and being pushed in a wheelchair by my husband to the exercise bike was enough to completely wear me out. I couldn’t even pedal hard enough or fast enough to keep the machine on.

Courtesy of Rick and Mallorie Norman

When the birth of our third child finally came, I had a team of 14 in the operating room trying to keep my blood pressure and heart rate stable. They kept checking my blood levels and giving me more oxygen. I fought to not blackout during the c-section because my body couldn’t stabilize itself. Afterward, I was hospitalized for 8 days at two different hospitals as I struggled to recover. I am so grateful to God we made it through all we did. We are so grateful for family and friends, who did so much to help us through that hard time. After I was able to go home, our thoughts turned to continue the process of finding out what was wrong with my body and getting my life back. I started going through more laboratory work, tests on my heart, and scans of my brain. We wanted to find something, anything we could do to move forward and find a normal life again.

Courtesy of Rick and Mallorie Norman

I decided I had to do everything my doctors told me to do. Even those small isometric exercises. We purchased a used indoor recumbent exercise bike and I started biking at night because that is when I felt the best. If I got too sick, I could just crawl into bed and go to sleep for the night. I started telling myself I could do 10 minutes, no matter how sick I felt. When I felt like I was going to pass out or throw up, I would just get off the bike and put my head on the floor and my feet up on the bed or the bike to get the blood back to my head. I stuck with it. I needed to get better, I had to get better to be there for my kids. I needed my life back. When 10 minutes started feeling more doable, I added 5 more minutes. Sometimes it felt like an eternity and I didn’t pedal very hard or fast to keep from getting too sick.

I started to notice a small difference in my symptoms and how much I was able to do the rest of the day. I started biking for 20 minutes every night. I wanted to try to bike outside, so I got on my mountain bike and went a couple of blocks. It made me miserable and I felt like I was going to throw up or blackout and had to lay down for 30 minutes to recover. But something about getting outside, getting fresh air, and having freedom beyond the four walls of my house or having to sit in my wheelchair was riveting to me so I tried it again and again. On one of those nights, my husband watched me laying on the floor trying to catch my breath as my heart rate and blood pressure were trying to stabilize. He pulled out his phone and started looking something up. After a few minutes, he stopped and told me I should do a bike race. I thought he was crazy. A few blocks had me with my head down and my feet up fighting to not blackout. And I was supposed to do a bike race?!

Courtesy of Rick and Mallorie Norman

But he was completely serious. He could see something I could not. I needed something to work towards and motivate me to keep going. He told me it was a 20-mile race, but I had 9 months, almost a whole year to get ready for it. I liked the idea of it, but it felt really out there. I didn’t sign up, but I kept it in the back of my mind. I kept biking for a block or two outside or 20 minutes inside. Finally, we found an outdoor recumbent bike that changed my position from sitting upright to more like sitting in my wheelchair with my feet up to pedal. It made it so I was able to do so much more outside. I went one mile and was elated. Then I went 2 miles, then 3. I would have setbacks and start feeling sick so I would cut back a little bit. But just getting outside and getting fresh air was enough motivation for me to keep trying. The more I biked, the stronger I got and the better I felt. I was able to walk around my home and do so much more than I had in a long time. I felt like I could breathe better and the time it took to recover became less and less. We started biking everywhere as a family. 3 miles turned into 10 and by the time that race came around I was able to bike the full 20 miles. I think I was the very last person to cross the finish line, but I didn’t care. I did it! And it changed my life. I gained the confidence, hope, and strength physically and emotionally to keep trying, to keep going, to keep moving forward.

Courtesy of Rick and Mallorie Norman

The next year, a doctor took 33 biopsies of my stomach and I was diagnosed with Mast Cell Activation Syndrome or MCAS (an overactive immune response which we learned may have set all of this off). Another biopsy from my lip revealed possible Sjogren’s Syndrome. I was given more medications and put on a medical diet. I was finally gaining some traction and finding out more things I could do to be the healthiest version of me, even if that wasn’t what it had looked like before. I was doing so much biking and seeing so much progress with my health. I stopped feeling sick from going out biking and started feeling sick if I didn’t go. That year, I signed up for the 40-mile bike race and my husband surprised me with a road bike. I was strong enough to be more upright and the combination of smoother tires and a lighter frame enabled me to go so much further. I ended up biking 63 miles instead of 40. I had found my passion. I didn’t have to be defined by my medical conditions, but I could write my own story. In 2020, I was able to bike over 1,700 miles making for a total of over 4,000 miles I had biked since my early efforts that had been so challenging.

Courtesy of Rick and Mallorie Norman

Today, we are so grateful to God for all we have been able to come through, for everything we have learned. We are so grateful for each other and for our children. We can never express enough gratitude for good friends and family that have helped us on our journey. We are learning life and the people in it are a gift. We have learned what is really important and what really isn’t. Life looks a little different for us than it used to. And that is okay. I still use a wheelchair when I know I will have to stand for a long time or walk very far. I use it when I go to church, the store, or when I volunteer at my kids’ school. Hikes we used to take as a family now include me on a mountain bike next to my family as they hike because the combination of sitting down and pumping my heart at the same time works so well with my body. I have a strict medical diet. We have to carefully plan ahead and make sure I balance my energies, as well as my heart rate and blood pressure. But we do it! And we are thriving again!

Courtesy of Rick and Mallorie Norman

Our path has turned to adoption to continue to grow our family. We found an amazing caseworker and started the extensive process of a home study. We discovered this included extensive applications and questionnaires, background checks, medical reports, interviews, adoption classes, and more. We just took it all one thing at a time, one day at a time. We finished the approval process and are looking for a birth family to connect with. And we couldn’t be more excited! As we navigate this new part of our journey, the lessons we have learned through infertility and medical challenges are invaluable. We know if we keep trying and keep moving forward, things will work out and we will be able to see this dream and others realized. It is so important to us to reach out and help others going through some of these and other difficult things.

Wherever your journey is taking you, we want you to know you are NOT alone. Whatever you are going through – you can get through it and become stronger. Start somewhere. Anywhere. And keep moving forward. Focus on what you CAN do. Take it one step at a time, one day at a time. DON’T GIVE UP! When one direction doesn’t work, try another and then another until you find what you are looking for. You will look back and realize you have come so far and it was all worth it.”

Courtesy of Rick and Mallorie Norman

This story was submitted to Love What Matters by Rick and Mallorie Norman from Utah. You can follow her journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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