Health, Unveiling Invisible Illnesses

Unveiling Invisible Illnesses – Preeclampsia

Roxanne is a strong woman with a masters in education and a passion for caring about others. The past few weeks have been roadblock after roadblock. Towards the end of her pregnancy, Roxanne was diagnosed with preeclampsia. She had to deliver her daughter early, by c-section, missing her maternity photo session and her baby shower, while worrying about the health of her preemie. After weeks in the NICU, they finally get to enjoy life at home as a new family of three, then Roxanne had a gallbladder attack. Soon after, she lost vision in one of her eyes.

I came to visit her in the hospital and she was in great spirits. While staying positive and hopeful, I still see a glimpse of worry tucked away. I recently came up with the name Post Traumatic Health Disorder (PTHD). Amidst the healing, support and love, it can still be tough not to be scared.

Roxanne shares her experience in hopes to let others know that they are not alone. As grateful as a new mother can be, it may also be difficult to see others have normal pregnancies and birth while going through many storms. At the end of the day, things could always be worse and we are given what we can handle and we grow from these experiences. We teach others how to be just as strong.

*I will continue to update this post, should there be any health updates while she is in the hospital or after she is discharged.

What is your invisible illness/diagnosis?

Preeclampsia, which has now become high blood pressure (hypertension), and idiopathic optic neuritis.

When did you start experiencing symptoms and how long did it take to get a diagnosis?

I had no idea I had preeclampsia until I was taken to labor and delivery at 32 weeks and told I was delivering that night. They said this was the only way to resolve preeclampsia. Luckily, another hospital I was taken to did not want me to deliver, but allowed me to be on bed rest after 24 hours of a magnesium drip and 24 hour urine collection. My diagnosis then was mild preeclampsia with edema, high BP, and protein in my urine. I was told to have NST (non-stress test) and labs twice a week to ensure the baby was doing well. I received two doses of steroids to speed up the baby’s development of her lungs, just incase she came early.

How many weeks were you when you had Brinley? Did you have any symptoms leading up to having her early?

I was 34 weeks and 5 days when I had another screening and was told my placenta has given out and she needed to be taken out by csection before she was stillborn. She wasn’t get blood and oxygen quick enough.

Did you have any health issues after she was born?

My health issues continued after she was born. I continued with the high BP, but swelling and edema went away. Brinley was in the NICU for two weeks. We were only home for a week when I had a gallbladder attack. I was three weeks postpartum and thought it was still preeclampsia related. We got to the ER and after testing, I had no swelling, high BP still, but no protein in my urine. I had my gallbladder removed at 5 weeks postpartum, and at 6 weeks postpartum I was taken off BP meds and dismissed.

Fast forward to 8 weeks postpartum and my eye was sore. With just one eye hurting, I figured it was from being tired with a new born so I brushed it off. I finally went to the optometrist where we thought allergies. It wasn’t. It got worse the next day and by day four I had lost all vision in my right eye. I saw an opthamalogist (a medical doctor) and had an MRI. They were looking for what was causing the blindness. I was diagnosed as optic neuritis. This means that something else is going on, because it’s not a single diagnosis but an underlying symptom of something bigger. Next, I’m admitted in the hospital for five days of high-dose IV steroids, and watchful eye on my BP and blood sugar. They have run many tests. I’ve been poked and prodded: two MRIs that show I’m perfectly healthy, and cleared from MS, lupus, Lyme disease, NMO, ANA, and everything auto immune. We still wait for the spinal tap to come back, but until then… it’s still just idiopathic optic neuritis. We are now on day four of steroids and my vision is slightly improving to where I can see shapes. It may take 4 weeks to a year to get back to where I was, but I will never be 100% in that eye. It’s scary, and my maternity leave has consisted of me and my newborn daughter taking turns in hospitals.

How do you juggle general postpartum with having health anxiety from so many traumatic health experiences in a row?

I don’t juggle. I’m just taking each day at a time. I’m not sure what else to do but to express my feelings and learning to try and deal with the fear of what’s next.

What advice do you have for anyone who is experiencing what you have gone through?

Trust your body and your instincts. I’m the most stubborn person I know, and I’ve had to push that aside and lean on people. My husband has been my rock, and without the support of him and my family and friends, I’m not sure I’d be doing as well as I am. Mental health is also important, so I’m seeking therapy now to help deal with anxiety and I will be the best I can be for my family.

Favorite quote:

It used to be, “What doesn’t kill you makes you stronger.” But it has progressed to, “This too shall pass.” It has to; and I will come out stronger than ever.

Three things you can’t live without:

My family, friends, and the ability to have a voice to help others and express that no matter what, you are not alone in your struggles.

What is the best way to support someone in your position?

Listen. Don’t react or give advice until it’s asked for. Listening and understanding, to a person struggling, is much better than just cutting them off and offering a solution. Sometimes we just need someone to hear us and know that our fears and anxieties are real and justified. It’s easy to tell someone to get over it or just move forward, but with trauma, no matter how big or small to you, is still trauma to that person dealing with it. It affects us all differently, but in the end…you are not alone.

Health

Tubal Ligation Complications – Filshie Clips

I had a tubal ligation in 2005 after having twin boys and a beautiful little girl. Having heart issues and pregnancy complications, it was the best choice for me. I am allergic to latex and birth control made me incredibly ill.

I was under the impression that they cut and tied or burned the fallopian tubes. I was never aware of anything being implanted or a device. Fast forward to Early 2017, when my heath issues are all over the place. I was having stomach issues, losing weight and dealing with an array of deficiencies and heart issues. I had many ER visits due to severe episodes of Postural Orthostatic Tachycardia Syndrome and had an xray done at the ER for stomach pain. As usual, I was sent home with no answers and told it was just anxiety.

Being the advocate that I am, I always head to the medical records department soon after a hospital trip. I gathered my medical records, labs and reports and sat down in my car and read through them. You find out much more about your health this way and it’s much faster than waiting for weeks or months for results or follow ups. I found over the years that medical professionals leave out a lot of important information.

One important piece of information that was left out, but mentioned on my radiology report, is that my right tubal clip was dislodged and located on the right side of my pericolic gutter. I was shocked. No one told me. I would still not know today had I not checked my report. I am sure that most of my health issues were not related as I have a long history or heart issues and Ehlers Danlos Syndrome but I’m sure it couldn’t have been healthy to have a metal clip lodging itself into multiple organs.

I made an appointment with my new gynecologist, not the one who installed the Filshie Clips. The doctor who put my clips in was the high risk obstetrician who delivered my daughter. The new doctor took on the challenge to located the clip (at one point was lodged in my bladder) and remove it and the other clip as well.

I am sharing this story because I urge women to ask questions, research and educate themselves. This story is another scary example of why it is so important to advocate for ourselves.