Greetings from Seattle! My husband, Michael, myself and our beautiful baby boy, Jacob, now have a new place to call home! I still can’t believe it has happened. My husband and I have always talked about moving out of state (originally from Chicago, born and raised) but, it just never seemed to ever happen. Until now! We are both very excited to begin this new chapter in our lives and to be able to provide baby J with a better life!

Like any life change, it’s an adjustment period. It’s like we are completely starting over. We know no one. It can be hard at times, especially when you do not have the best of health. It’s hard living your life with no answers when you know something is really wrong with you. I feel it everyday. Getting out of bed is a struggle, maintaining our household is a struggle, some days getting dressed is a struggle and it all catches up to you one way or another.. and today mine did.. for the first time in 1 year, 8 months and 6 days…I had that horrible moment of completely loosing time. Literally. Full blown “episode” as I call it, since we really have no idea what they actually are.. let me walk you through what happens to me during one of my many episodes.

There is no trigger, I could be sitting, walking, standing, driving or basically any day to day activities and completely pass out. I have about less than a minute to get to a safe place once I feel one coming on. Today, I was sitting in a chair at the gym where we just signed up for a membership to try to help my body feel better. (ironic isn’t it) It starts with the feeling of tiredness, then I start shaking, more like tremors you could say, first in my hands then up my arms, then into my legs. My entire body gets weak to the point where I can’t support my own weight, so I have to sit. I feels like I have 30lb weights tied to every limb of mine just weighing me down, it hurts to move everything. After that I get extremely hot, sweating profusely,  and I turn very pale white. As soon as I hit that point, there is no turning back. I know its going to happen. At this point, I usually get a ton of anxiety because I hate what happens next, so I get upset which doesn’t help the situation. Next comes blindness. It happens slowly, I start by seeing black dots and they quickly fill up my entire eyes until I see nothing but darkness. Everything is completely black. After that, I hear a loud ringing whistle like noise in my ears and then nothing at all… I’ve completely lost touch with all of my senses. Within seconds, I completely black out. I have absolutely no recognition of what is going on at this time, I can’t see or hear. I am completely unconscious. This doesn’t last long, probably about 30 seconds, and immediately after coming to, I vomit. So, I try to always make my way to bathroom as soon as I feel an episode coming on. Its much cleaner that way.

After my episode is over, I regain my vision, hearing and sense of touch.  However, my body is left freezing cold, shaky and extremely weak. I can barely lift myself off the bathroom floor. Usually, my husband has to help lift me up and take me to lay down. My face gets extremely tingly and I’m usually down for the rest of the day trying desperately trying to restore my strength. These “episodes” began around the age of 10 or so, they were very infrequent. Maybe once or twice a year. As I got older, they became more and more frequent. In my late teens to twenties, they were happening about twice a month. That’s every other week. I was tired of never knowing what was wrong with my body. Frustrated at the fact that I never knew when they would strike, what would trigger them. I wanted answers. I wanted to be healthy. I was married and we wanted to have a baby. Michael was afraid of getting pregnant in case I passed out, what it would do to the baby. I was devastated. I’ve never longed for something like I’ve always longed for a child of my own. It was a space inside I’d been dying to fill and to hear that I potentially couldn’t have that was unbearable, it was heartbreaking. That’s when the doctor visits began. My husband wasn’t telling me no, he just wanted to see what we could do about my health first.

From the get-go, I was a mystery. My primary didn’t know, ran a bunch of tests, blood work, ultrasounds and a bunch of “I’m not exactly sure what to tell you”. So, I was referred to a specialist. Passing the buck. Well, it could be this, or it could be that, were not exactly sure is what I kept hearing. Every blood test and ultrasound came back negative, my results showed that nothing was wrong with me. I began to think it was all inside my head and there really wasn’t anything wrong with me. In the midst of all of these doctors appointments, we found out we were PREGNANT! We were ecstatic! We couldn’t be any happier, its what we always wanted and it was all happening!

After the excitement wore off, worry was quick to settle in. Could my body handle it, what if I passed out while pregnant, what would it do to the baby, etc. We tried to keep up with doctor appointments but it was hard. I was unbearably sick. The one thing that I had longed for and wanted so much was literally destroying me. I was diagnosed with Hyperemesis Gravardium. It was literally the worst thing I’ve ever experienced in my entire life.. I hated it. I just wanted it to end. As hard as it was to except, I couldn’t help but think about ending my pregnancy, not that I would ever choose to do that, but the thought had crossed my mind more than once. I physically couldn’t handle it anymore. I could barely take care of myself, I was hanging on by a thread. I couldn’t work, I couldn’t shower. All I did was lie there and get sick. Were talking about 16-20 times a day. I couldn’t even hold down water at that point. I visited the emergency room more times in 9 months than I ever had before. Laying in a hospital bed being pumped via baby needles with fluids and monitoring the baby, dosing me with drugs to stop me from throwing up. Every wives tale to end morning sickness was tried, more than once, research was done to help. Nothing helped. I threw up so many times in one day that I literally tore the lining in my esophagus. I was puking up blood all evening long. The morning sickness finally subsided around 26 weeks. It went to about once or twice a day. I was showering by myself, holding down most of my meals and even leaving the house! I still struggles gaining weight, I had only 1 pregnancy pound at this point. My doctors were getting worried, I was told to try to eat anything I possibly could to gain weight, otherwise I was on my way towards a PIC line.. I was devastated. That was the last thing I wanted. I began eating ice cream, as much as I could all day long. I figured if it came back up at least it would be smooth and not hurt my throat. Luckily, I kept it down! Two weeks later, I finally gained 2 pregnancy pounds! We steered clear of the PIC Line. I slowly continued to gain about 1 lb every two weeks. Around 32 weeks my morning sickness subsided to once a day, then at 34/35 weeks it was every other day. Baby J was PERFECT! It remained every other day until I delivered Jacob at 38 weeks. After a grueling 25 hours total (early labor, labor and horrible pushing with a useless epidural) my beautiful gorgeous baby boy was born at a healthy 6lb 10.7 oz! I did it! And I did it all WITHOUT passing out, not one time!

After having baby J, my usual, normal symptoms slowly came back. We knew it was only a matter of time. I still hadn’t passed out but would get symptoms of the beginning stages of it. I was extremely fatigued, lethargic, weak and just couldn’t function. These are symptoms that I still struggle with on a daily basis, and still with no answers.. We did continue to go to specialist after specialist to try to find some answers. All we kept hearing was, “All I have is my best guess.”  A GUESS??? What am I supposed to do with a best educated guess.. So here I sit, treating the symptoms not the problem. Jacob is now 10 months old and I still haven’t had another episode, until today. I’m devastated. We knew they would return, it was just a matter of time, but I didn’t expect to be this upset about it. I hate my body for doing this to me. I just want answers. I do have hope that we are in the right direction.  However, I have been seeing a cardiac electrophysiologist. Still no answers, this is his BEST EDUCATED GUESS… but at this point we will take it. Next month, I will be having an insert able cardiac monitor installed to keep track of my heart for the next three years. They want another “episode” to happen to watch and see what its doing to my heart. IF he is right, my heart rate will drop to almost nothing, causing me to pass out. If this truly is what is happening to me, the next step is to install a Pacemaker…. I’m 24 years old. I have come to accept that fact that this very possibly may happen to me. On a good note, if this is what he THINKS it is, and I have the pacemaker installed I WILL NEVER EVER pass out EVER again. The pacemaker will act a shield in a way. Anytime my heart rate drops under 60 bpm, it will automatically kick in and stop me from loosing consciousness. That is the good news, the bad news is that is only one of my problems, he has no answers to my other symptoms. He can’t help my fatigue or lethargy or unexpected weight gain, or chronic migraines or extreme weakness/tiredness. It’s a process and it takes time, I understand that. So here I am still waiting for answers, hoping that this man’s educational experiences bring us in the right direction. After all, that’s all we can really do anyways, right? I’m not ready to give up yet, this is my life and my fight and we WILL find answers! Thanks for listening..