Posts Tagged ‘Rare disease’

Crawford Road

Crawford Road (Photo credit: kevincollins123)

When you spend most of your day in the bathroom, heaving up the crackers and ginger ale your mother just knew would make you feel better, it’s difficult to look on the bright side of things. When you have hyperemesis gravidarum, you barely have strength to get to the toilet let alone summon the energy needed to vomit for the tenth time that day. As if the constant nausea and hyper salivation weren’t enough, you’re saddled with common pregnancy complaints: swelling, back pain, perhaps carpal tunnel in your wrists. No one understands why you’ve isolated yourself from the world, no one understands that you’ve already tried every form of ginger and anti-nausea wives tale that exists. Hyperemesis gravidarum makes it impossible to see any silver lining in the cloud of nausea that follows you 24/7.

And yet… is there a bright side? When you’re fighting a chronic condition like hyperemesis gravidarum, it’s nearly impossible to remove yourself from the debilitating condition you’re in. I encourage you to try, even for a miniscule moment, to push aside how you feel and think about your future. When the baby comes, this illness will go away. You have hope. There is a light ahead of you. You have to battle through the darkness to get there, but there is no other disease I can think of that offers a happy ending like hyperemesis gravidarum.  When you deliver your child, you will have conquered your foe. There is no other ending.

So today, my sisters in suffering, try your best to keep the future in mind. Yes, your body is dragging you down and telling you that something is terribly wrong. Yes, everything hurts and you feel miserable and this isn’t the pregnancy experience you had imagined. Accept those things and focus on the road ahead. It’s dark, difficult, and lonely. It’s not easy. But that road leads to a beauty and joy that has the power to erase the suffering you’re enduring. All you have to do is put one foot in front of the other and believe.

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Pregnant Lotus Smile

Pregnant Lotus Smile (Photo credit: bettina n)

I’ve accepted it: life doesn’t get easier. We trick ourselves into thinking that a new car, house, partner, or job will lead us to a happier, easier life. I’m still caught up in this cycle. I seem to need a hope, something to keep me going. I think that’s how many of us were made. Often, when that hope or dream is realized, it rarely solves my problems. Yet there is something about the journey that is rewarding; a sharpening of character occurs, a resolve to do better develops, and a new dream is birthed.

When I suffered from hyperemesis gravidarum, I lived for the day when I could eat again. I dreamed of vomit-free nights,  a life filled with people, of a beautiful baby to cuddle. All of those wonderful dreams have come to pass, and they will come for you, too. Right now, you are probably slogging through each day and night, laying as still as you can in the hope that you won’t throw up again. I’m sure that you, as I did, were often unable to think past the nausea.

So today, allow yourself to dream of the future. Use that dream to push you forward. Keep pressing on. When your hyperemesis gravidarum goes away, and it will, life will not magically become easier, and it won’t turn into a slice of perfection. You will face another set of challenges. But your health will improve. You will hold your child in your arms. And you will have forged a strength of spirit unimaginable.

I’m a big sci-fi fan. Something about the unknown fascinates and terrifies me. But it’s a good curiosity, a safe fear, because I expect little in the world of science fiction to ever happen. When I suffered from hyperemesis gravidarum, I faced a different kind of unknown. Why couldn’t I keep any food down? Why would my body reject even drinking water? Would my baby survive? These fears were not safe because they were real, and they terrified me.

Recently, I viewed a trailer for Will Smith’s upcoming scifi film, After Earth. The story of two soldiers lost on a dangerous planet, facing unbelievable odds, must survive. Sounds fun. The voiceover, however, struck something deep inside my mind. Smith’s character says, “if we are going to survive this, you must realize that fear is not real. It is a product of thoughts you create… danger is very real, but fear is a choice.”

Think about that for a moment. Is fear a choice? Yes, fear is an instinctual reaction we have to danger. In some situations, it can be very healthy and help us protect ourselves. Yet the fear I felt while suffering through my hyperemesis gravidarum pregnancy– on the bad days, when I lay in bed crying, weak, and so very nauseous– was not healthy. I tried to remind myself that my doctors (and I had a team helping me through my hyperemesis gravidarum pregnancy), said the baby was doing well. But these logical thoughts seldom overcame the fear that overwhelmed me.

Toward the end of my pregnancy, I remember discussing my zofran pump with my doctor in her examination room. Suddenly, I felt faint. I passed out, had what I felt was at least a forty-five minute dream in which I road different rides at a sea-side carnival, and then woke up to my doctor saying my name. I instantly became terrified and started to cry. When I asked what happened, my doctor said that I had just had “a little seizure.” I had been out for less than a minute. I was so worried that the seizure would have somehow hurt my baby. Luckily, he was fine. But as my pregnancy continued, the sharp memory of that fear stabbed at my mind. It was growing stronger. I knew that I had to fight to overcome my fearful thoughts. Some days I was successful. Other days, I failed terribly.

Having survived a hyperemesis gravidarum pregnancy, I feel qualified (at least on some level), to give those who are in the midst of suffering some advice. So here it is, dear ones. Will Smith is right: fear isn’t real. It is a product of our thoughts. It is a choice. Sometimes, that choice is made for you by your body’s instinctual reaction to danger and the unknown. When that happens, recognize what you’re feeling. Try to understand why you’re afraid. Know that it’s okay to be scared. But don’t wallow in fear. When you feel unable to overcome those emotions, it’s time to start fighting. How can you do that when you’re an exhausted, vommity mess?

Start with distraction. Immerse your mind in something else. Browse online stores for baby clothes, listen to a book on cd, call a friend, or watch a comedy. Districting your mind is a great way to give it rest.

Next, gather information. When I was pregnant, I read every blog, every journal article, every website about hyperemesis gravidarum I could find. The unknown is always scary, so the more you learn about what’s going on with your body the quieter your fears will become. Forget about being annoying and call your nurse, doctor, a psychologist—anyone who can offer you information— three times a day if you need to. You’ve got one of the toughest jobs known to humanity: carrying a child. If you need to know something, do not hesitate to ask.

And lastly, be cognizant of the tiny moments when things are okay. It may seem like life is a constant, grueling, miserable experience. Even so, look for the good: feeling a kick, going a day without vomiting, being able to eat a potato. Notice these times and remember them. Write them down on post-it notes if it will help. And when you’re feeling scared, recall those moments and know that you will have them again. Hyperemesis gravidarum comes with an array of complicated and miserable symptoms. It’s downright awful. But it is survivable, and you are a survivor. You will do anything you need to produce a healthy baby. That may mean facing your fears of blood draws, medicine pumps, PICC lines, and even hospitalization, but if that’s what it takes to keep your child alive you will do it. And you can do it.

Help others by sharing some of the fears you face. How do you overcome them?

Uprising fist

Uprising fist (Photo credit: Wikipedia)

If you’ve got HG, you’re fighting not only for yourself but for your unborn child. It’s a grueling, debilitating, daily struggle.

Your inspiration for today? Nick Vujicic

This guy is a motivational speaker who makes an impact on those around him. Why is he so inspiring? He was born with another rare disease–Tetra-amelia disorder. Because of this disease, he doesn’t have any arms or legs. Yet this guy travels the world teaching others that they can overcome their toughest challenges.

I know that it’s hard right now. I know that you’re dehydrated, constipated, and miserable. So take a deep breath and listen to the words of someone who has a permanent condition and can still find the will to survive.

P.S Who inspires you? What gives you hope? Help other hg warriors by sharing what keeps you going in a comment below.