New year...

On this last day of 2012 I can only hope that with the new year comes a new lease on life for me. My body is slowly giving out on me. I spend 16+ hours in bed. I have little to no interest with interaction involving the outside world. The only people I talk to on the phone are my mom and brother. On top of HG I have a cold and can barely breathe. I'm ready for a fresh year and hopefully a fresh outlook on life!

I know it's too much to expect but I keep hoping I will wake up and this debilitating disease will be over. That I'll be miraculously healed and life will be normal again. It's too much. Too much to go through this existence that's hardly any existence at all. I'm able to keep food and drink down but only because I take two different medications four times a day each. Every three hours I'm taking something. It scares me to think that if I miss them...sometimes even if I'm just a bit late...I'll get sick. The dread of being sick rules my life. I'm tired and ready to give up.

So I really hope the new year at least provides me with a better look at things and the willpower to go on for five more months.

In for the long haul.

Had a doctor's appointment today. My daughter got to hear baby's heartbeat. She thought that was pretty cool! She never got to go to any prenatal appointments with her brother because she was always in school.

My OB told me today in his experience if it doesn't leave at the end of 12 weeks you can expect HG to last until 18 weeks. If it doesn't leave then it usually sticks around the whole pregnancy. I will be 15 weeks on Saturday and I'm still deep in the throes of extreme nausea and occasionally vomiting. My meds are managing to keep food and liquid in my system but I can't say much more for them. This beast is adaptive to say the least! What works this week may not work next week. We've switched my supportive med from reglan to compazine. Hoping maybe that will offer a bit more relief during the time when my phenergan is wearing off.

We get to play what my husband calls "picture pages" at our next appointment. Looks like I'll have at least two more ultrasounds before this is done. That's their only definitive way of checking to make sure the baby is growing properly.

It's funny not to hear my doctor lecturing me about proper diet! Last time he went on and on about it. This time it's all about survival and eating whatever I think I can keep down.

I'm fighting off a cold and it has made my throat quite raw. I think I'm going to attempt making some soup for dinner. Off to make my attempt!!

Blessed.

Today I am going to focus on the positive. I have a supportive family who doesn't think I'm crazy. I have two great kids who are the light of my life. I have a husband who has taken care of me through all the ups and downs of this disease. Nothing says love like holding your hair while you throw up!

I hope everyone has a very Merry and blessed Christmas! Enjoy this day and tomorrow as we celebrate the birth of our Savior.

Setback

I overdid it yesterday. Too much out and about and I spent the evening in bed feeling horrible. I threw up for the first time in days.

My husband said he was glad I did so much. That I gave all I had to my family. I try to see it from that perspective but it's hard. Now I don't feel like getting out of bed.

I know I need to eat but nothing sounds good. I feel like I'm back to square one with the appetite vs knowing I need nourishment battle. I don't want to get sick. The thought of throwing up scares me now. It equals my body not being good enough...not being strong like it needs to be for the baby. I doubt that's rational but it's how I feel.

I was 14 weeks as of yesterday. Supposedly the majority of HG women see relief somewhere in the next two weeks. I hope I'm one of those women! This setback last night has me filled with doubt that this nightmare will end anytime soon.

Thoughts

I'm awake. It seems an odd time but here I am so I guess I'll write a little in hopes I will be able to get a little more sleep.

Yesterday was a good day. I was able to do quite a bit including a trip in the car to get my daughter from her dad. I'm glad she is here to spend the next week with us. I have missed her a ton. We missed out seeing her last weekend because I was in the hospital and not able to go get her.

How do I explain this disease to an eight year old? You'd think it would be easy. I've told her her new brother or sister is making me really sick and explained I'm on lots of medication. But is that a good explanation? I'm not sure. It's hard for her to grasp the concept.

Yesterday I was able to eat quite a bit. I'm happy for having an up day but I'm still scared. Maybe this nightmare is coming to an end. Maybe soon I'll be over the hump and able to enjoy this pregnancy!

But I know I will never fully enjoy it. I live in constant fear now. Fear this ugly beast will rear its nasty head and all will come crashing down around me. It's not uncommon for a lull followed by more weeks and months of heartache. I find it easier to hope for a good outcome but expect a bad one. If I expect a good outcome and am let down I think my spirit would be crushed.

I'm not sure how to fully recover from this disease called HG or if I even can. I'm part of a club of women nobody wanted to join and the toll it takes on us, body and mind, is great. If you've never been there, it's hard to relate to us. Our only support is each other. We rely on our spouses to get us through but that's only for survival. For understanding we reach out to one another. We share our crazy medication lists in hopes what has worked for one person might work for another. It's really just grasping at straws though...everyone is so different and my cocktail only seems to be effective for me.

The next week scares me. Going to family functions has taken a back burner to surviving. I hope I make it through the one I have committed to. If not I guess we will leave early. I can only hope people understand. I've become a hermit. Isolated and alone from the world save my husband and children. My "friends" don't email. They don't text. Or call. They don't leave notes on my Facebook asking how I am. It's funny, they say in times of hardship you find out who your true friends are. And I have. Not that I'm surprised by this; the world often works this way. But it would be nice if it didn't. It would be nice to be included in invitations even if the answer to the invitation is no as they expected. They say it's the thought that counts and it's a true statement. But people don't seem to understand that concept. Perhaps it's that they do understand and just don't care. Maybe all they see is me not reaching out. Well right now I'm busy surviving. I don't have the strength to reach out. Struggling to get through each day is the best I can do.

A triumph and a test

Trying something new today. The Prima Bella bracelet. It sends an electric pulse through the nerves to the emetic center of the brain to try and restore the stomach to a normal rhythm therefore taking away the nausea. We're using it in conjunction with the phenergan and reglan.

It has been one of those days. I woke up feeling sick and it hasn't let up much since. The bracelet seems to help some but it certainly isn't taking everything away. I know at this point there is no miracle cure but it would sure be nice to have some relief.

Thankfully I am eating and drinking enough that my body isn't breaking down anymore. Yay! Not only does this mean I don't have to be hospitalized it also means baby should be getting the things needed to grow. We won't know for sure until the 20 week anatomy scan but the fact that I'm able to keep food and water down is a real blessing. Some women cannot and end up with feeding tubes and constant IVs. I'm so thankful I have a moderate case of HG.

A number

130. Three months ago I would have rejoiced at that number. Today it's just another reminder of the failure my body has become. 12 pounds lost. Who knows if there will be more.

I got out of bed before noon today. This is an accomplishment...my husband will attest to that. I actually have decent clothes on. Again, an accomplishment. Hasn't happened since before I went to the hospital. Our goal is the grocery store. I may end up doing something I never dreamed I would and riding one of those electric scooters. Walking takes energy. Energy I don't have.

Play time with my son consists of him climbing on my bed and playing with his trains or stuffed animals. It's all I can manage. It makes me sad some days. Other days I'm grateful I get to play with him at all!

I live in constant fear I'm hurting my baby. My lack of adequate nutrition is bad. I just keep praying the baby will be healthy and ok. It's all I can do.

I've been crocheting a blanket for my wee one since it doesn't require much effort. It helps take my mind off things.

Now I'm off to try and make a success of this day. I pray it works!

Home at last.

Got to come home last night! It's nice not to be hooked up to an IV anymore! I'm able to eat and drink and have short periods of time without nausea. According to one of my OBs this may be the best I can hope for. Every time I eat it makes me feel sick but it's staying down.

I have to go to the doctor sometime next week. They are going to give me a device called Prima Bella. It's a bracelet that gives an electric impulse and can help with the nausea. At this point I'll try whatever they tell me!

I've managed to drink almost 64 oz of liquid today...a vast improvement over the approximately 4 oz I drank monday! It finally doesn't turn my stomach to even think about drinking it. I'm hoping this means I will be out of this nightmare faster than I've assumed. I try not to get my hopes up too much because if it lasts longer I don't want to get depressed. I'm prepared for the long haul.

Once again some dummy public figure has ridiculed the HG community. A radio talk show host called "Morrissey" decided to take it upon himself to say Duchess Kate should feel responsible for the suicide of a nurse at the hospital where she was admitted. All because some smart alec in Australia called and pranked the hospital and that nurse gave out information regarding Kate's hospital stay. Gee, let's not hold the radio station in Australia accountable. Let's make fun of a very real illness and act as if the thousands of women who suffer from this terror are all crazy. Seems like a good idea for a recognized medical condition, right? Wrong!

A few tips if someone in your life is struggling with this:
-don't "cracker" her. Saltines and ginger ale will not fix it. In fact, mentioning these things may make her puke on you.
-don't try to compare your bout with nausea while pregnant to her disease. It's not the same. Think nausea and vomiting so bad medicine doesn't control it. Anything at any time can bring it on. Even if it goes away after 14-20 weeks it can come back. And often does. Think malnutrition. Think dehydration so bad the nurse blows veins trying to get an IV in her to rehydrate her.
-don't treat her like an outcast. Call her if she's up to talking on the phone. Email her. Send her cards. She already feels alone enough...saying nothing because you don't know what to say makes her feel even more alone and depressed. Make an effort!
-Support her support system. Significant others of the women suffering from HG are more than likely spread so thin they are barely functioning. Ask if you can watch the kids (or sit with the sick lady) so he can get some time away. Make him some food. Chances are he can't cook in his house because the smell of food being prepared can be a trigger that sends Ms. HG running for the porcelain throne.

I may think of more later but those are my ramblings for tonight!

The pictures...hubby and little man. DH is exhausted after a week of running around trying to take care of our dogs and son and me while I was hospitalized.
My bruise from my blown vein (that's from Monday night).
And just for something happy...little man and me at the zoo on thanksgiving day.

Hope of going home!

Being away from home is starting to get old. I long to sleep in my own bed! I may not have nurses there but it's way more comfortable.

The doc told me I may get to go home! That's the first time they've suggested it as a possibility. Right now we're doing phenergan suppositories and reglan by mouth. Hopefully that's the right combination. We tried compazine but it seemed to have no effect. Dr said the best I may be able to hope for is not vomiting. I'd still be nauseated but at least if I can keep down food and water they can send me home.

One of the strange side effects I've had...my right hip is numb. It will itch but when I try to scratch it I get no relief! The nurse said perhaps one of the phenergan shots hit a nerve and it should go away. We shall see!

Still in the hospital

This is day three of my hospital stay! I'm ready to be at home but we haven't found the right combo of drugs to make that possible.

My butt is pretty sore. I've been receiving phenergan shots at least three times a day there. Of all the things we've tried it seems to be working the best. But since I can't get shots like that at home we have to come up with an at home solution. So we are trying alternating compazine and phenergan suppositories. Yippee...not much fun but such is life. Being so sick I can't drink water isn't much fun either.

I've come to the conclusion that I may be allergic to zofran. Both my injection sites for the subcutaneous pump look and feel awful. When they gave it to me via IV (they started it again Tuesday night) it seemed to make things worse, not better. I did better on just the phenergan shots. So we've stopped the zofran entirely.

My sweet little boy came to see me Tuesday evening. I miss him! He brought me a balloon and my husband's dad and his cousin both brought flowers. It brightened my day. I also have my son's stuffed hippo here keeping me company.

I'm ready for this battle to be over. It's wearing me down fast. I can't move my right arm freely because of the IV. If I want to take a shower they have to remove my fluid drip and tape Saran wrap over my IV.

Anyway I'm trying to fight through eating my lunch so I'm going to stop for now.

In the hospital

Yesterday was my darkest day yet. I drank barely 4oz of fluid and ate only a breadstick. My husband called the doctor's office and they told him to take me to the ER.

We arrived a little before 5:30 and I was given iv fluids around six and sent out to wait. We sat for almost five hours in the waiting room. When my bag was done they removed it and left me to sit.

When we finally got back to a bed we waited some more. By this point I had a pretty bad headache. My leg was hurting pretty badly too from my subQ site (I have two hard red lumps from what they think is a reaction to the medicine). I wasn't able to get any medicine or more fluids until I saw a doctor. Of course right when it was my turn someone came in on an ambulance in critical condition!

When he finally came in and talked to us he said there's no fear for the baby (nurse checked heartbeat and it was 168). He ordered an iv with dextrose and some Tylenol and phenergan.

They decided to admit me and I was finally taken to a room around 2 am.

I will write more later. Sitting up to write this has taken its toll. I'm starting to feel pretty sick.

My superhero...

Home care came today. Got my needle site changed and the dose on my zofran upped. I pray this does the trick for the overwhelming nausea.

Today has been not so good. Woke up with a low grade fever and nauseated. I didn't feel like eating or drinking anything until about 11am. Got a few sips of water down. After the home care nurse left my husband gave me some powerade. I've managed a few swallows. I'm lying here praying this wave of nausea passes quickly.

One thing I will say...I am eternally grateful for a wonderful OB staff who believed me and took everything seriously. I've never felt belittled or like I am crazy. They've been on top of things from the time I told them just how sick I've been. Not every woman with HG can say that.

Some doctors still think this awful disease is psychological. They treat the women who have it like mental patients. Now, it does mess with your head. But not because it's all in your mind. Rather, your body goes into survival/starvation mode and you start thinking crazy things to try and deal with it. I don't discount that part of the problem is psychosomatic but that is a symptom, not the cause. The cause is not known. There is no cure, other than to have your child. Sometimes even then it can linger. I was reading a blog today of a mom who still had nausea and vomiting over a year after the birth of her son. Women are scarred by this. They are left with PTSD. Emetephobia (sp?) is common (fear of vomiting). They are left with the tough choice of whether they want to endure the trial again to have more children. They lose children because their bodies are not healthy enough to sustain the pregnancy. Some even do what seems unthinkable and terminate. I have learned that I can understand why they would. These are wanted pregnancies.

But HG takes away the ability to think rationally. It robs your joy. All you can think about is how you want this to end. How you want to be normal again. To be able to eat. Drink. Play with your children. To be able to work. To drive a car without getting sick. Simple things, really. Things we take for granted. Right now I can't even tie my own shoes. My husband does it for me. He cooks (when I can stand the smell), he cleans. He does the laundry. All of it. He also goes to work. He takes care of our 20 month old. He has become my rock and my superhero. He talks to the nurses and the doctors on the phone because I don't feel like it. I don't know how he does it but he's managing. I'm so thankful for him because without that support I would not have made it this far.

Hills and Valleys

Made it through the day without vomiting! It's sad I consider this a good day. I've been extremely nauseated today and a few times I thought I was going to lose it but I managed not to. I broke down tonight and took a phenergan so I could make it through my husband's "cousinpalooza." It was good to have a big group of family all in one place!

I'd like to touch a little on the hills and valleys this ride can take. Up days make me feel like I'm crazy and I'm just being a baby sometimes. I think, "maybe I'm exaggerating. Maybe this isn't that bad!" Down days make me so depressed I start thinking irrationally.

Let me make one thing clear: this baby is very much wanted. I count this as a blessing from God. I love my baby and cannot wait to meet him or her.

I make that disclaimer because the next part is dark. The darkest I've ever thought. I have prayed for a miscarriage. I have contemplated termination. This is completely irrational. I know it is. But this is my nightmare. My body is failing. Most days I barely drink anything. I eat even less. I have gone into "starvation mode" at least once. All because I'm pregnant. The end is not here and the medicines barely manage the symptoms. I can't imagine what it would be like without them...with them life is barely tolerable. This disease plays tricks on my mind. I think things like "if I weren't pregnant this would be over."

Today I would consider a hill day. I didn't throw up, just gagged a couple times and felt queasy all day long. I try not to put hope in another day being that way because if I do and it's a valley day I don't think I could handle it.

I live in constant fear. Fear of nausea. Fear of being sick. Fear that I am going to harm my baby because my body is producing too many ketones. But if I don't feel like eating or drinking I just can't force myself. If I do I see it again a few minutes later.

I am so glad I got to spend time with family today. Life is precious and spending it with those we love is so important. We never know how much time we get on this earth so while we are here we must cherish every second!

A day.

Yesterday was good and bad. I was able to get some rest and that was good. My husband brought me pancakes and they tasted good. They sent me running for the bathroom after I ate them though.

My husband took our son to Grandma's. He had a good time and didn't want to leave! He had to be bribed with going to see his friends.

I was able to get dressed and go out for a bit. Overwhelming waves of nausea happened a few times but overall I did ok.

We went to small group and I made it through the night with pretty minimal nausea. I tried to stay in one place as much as possible and force my mind not to think about how sick I am. I got into the car to go home and almost immediately started puking. Halfway there I finally stopped (it's about a 20 minute trip). Got home and other unpleasantness started. Joy. After that I was exhausted and went to bed.

I woke up this morning with a headache. My husband gave me some Tylenol and I hope it helps. I don't feel like getting out of bed. Right now I'm lying here listening to my 20 month old jabber on in his own little language and it makes me miss playing with him so much!

I'm hoping today I can get in the bathtub and get clean. I'm not allowed to shower because I can't get my sq line wet. I guess I'll wash my hair in the kitchen sink if I have the energy.

It's so hard to accept that this is my life now. This debilitation. The frustration that I can't even do the laundry. We might have to get daycare for our son because I can't take care of him by myself anymore. I feel like my body is failing me. We were designed to do this and I can't. This disease scars you. It messes with your mind. Thoughts...irrational thoughts...come often. Nightmares happen almost every night.

I'll share more later. I don't want to get too depressed.

My journey so far

I recently became well acquainted with an illness I really wish I knew nothing about. When I was pregnant with my son, one of the girls on my babycenter.com birth club kept talking about hyperemesis and how it had taken over her life. She was in and out of the hospital an hooked up to IVs and other things to help her survive. I felt bad for her but had no idea what she was going through.

October 10th I found out I was pregnant. I had gone to the ER due to some complications from a medicine I was put on for a UTI. They did a pregnancy test and it was positive! I was in shock. My husband was over the moon. I was 3weeks, 4days (I had no clue since it was earlier than what I would have tested at home).

October 14th I got a text from my mom at midnight saying she was headed to the hospital with my brother. They were following the ambulance with my dad in it.

I arrived that afternoon to find Dad in a drug induced coma, clinging to life with the help of a ventilator and two blood pressure medicines to keep his BP up. Our family was faced with a tough decision. You see, Dad had cancer. It wasn't going away and he had been living with a lot of pain for a long time. Even if he survived the infections that had taken over his body and put him into septic shock, he would wake up still with cancer. He would be too sick to receive the stem cell transplant they had lined up. We all prayed God would give us the wisdom and peace we needed and Mom and I went to her house to get some rest.

October 15th was a chilly morning. We spent it trying to figure out what was wrong with Mom's gas line. We finally arrived at the hospital at 11am. As we stood and talked to the doctor, our decision became clear. There was no hesitation. No "is this really the right thing to do?" There were lots of tears. Lots of hugs. But no question that it was time to let him go. We waited for his older sister to arrive and once she did she took one look at him and agreed. It was time for Dad to go home. Truly, I believe he was already gone. He was with his precious Jesus whom he loved so dearly. Dad was a light to all who knew him. When Mom and Dad's pastor arrived, we all gathered around his bed. We read some scripture. The nurses unhooked the IVs and as we stood waiting for the inevitable Mom, my two brothers and I choked back tears and we sang. We sang old hymns and some songs Dad loved. At 4:10pm the Lord took Daddy home. Home to heaven, where he has a new body. Home where cancer no longer plagues him. Home where his beautiful voice can ring out loud and clear, singing praises to his Savior.

Thursday brought the visitation and Friday the funeral. They were hard but at the same time, we rejoiced for Dad. He won his ultimate prize. The race, for him, is over.

Now back to me. Saturday (October 20) I woke up with the dreaded morning sickness. Hoo boy, here we go, I thought. I knew I had a long drive ahead of me the next day and I prayed I would get through it with ease. Thankfully I had little sickness during the trip.

Since that morning (I was five weeks at that point), my morning sickness grew progressively worse. It went from being controlled by the standard go-to remedies (ginger, crackers before getting up, lemon lime soda,etc.) to overwhelming my life. I had no relief from the nausea and when I wasn't vomiting I was having other issues which are equally unpleasant and just as dehydrating. I called my OB office and they gave me zofran, 4mg every six hours. It helped some but never took the nausea away. I called again when I was about to run out. They gave me 8mg every 8 hours that time. It helped but still that feeling of nausea lingered.

After fighting that feeling, throwing up almost everything I ate and getting to the point where I was afraid to eat or drink anything for fear of it coming back up, I had had enough. Thursday Nov 29th we went for an ultrasound of baby. Baby was healthy and kicking away. I was relieved that my poor diet wasn't hurting my child. We told the ultrasound tech that I was really sick and I wanted to speak to the nurse. She said no, you need to be seen. I left my sample in the bathroom and sat in the waiting room. When I was called back and talked to the nurse practitioner I was given one option. Go to the hospital for IV fluids and medicine. I was so relieved!

After sitting in outpatient recovery for two hours of IV fluids and zofran and reglan intravenously I felt a lot better. We went and filled a prescription for reglan to take with the zofran and went home. By Tuesday the 4th of December I was not keeping things down. My doctor had called in phenergan Monday and I took that instead of the zofran and reglan. It had done no good. So Tuesday found us once again at the hospital. We arrived at ten pm. I received three bags of fluid, zofran and Pepcid through a second IV.

Wednesday I had my scheduled appointment with the n/p at my OB office. They decided at that point it was time to pull out the big guns. A subcutaneous pump was what they suggested. The hope was that since it is a different delivery method it would get me ahead of the sickness so I could begin to get nutrition again.

Yesterday evening a home health nurse came and helped me install the pump. I almost passed out...I don't like needles! Last night I was able to eat some chicken broth without feeling like it was going to come back up. A small victory!

Today I had some pancakes for breakfast. I figured they are bland enough and I need the carbs. Five minutes after eating them I was running (well, hobbling really) to the bathroom gagging. Thankfully not much came up. So I'm still getting some nutritional benefit.

If I'm lying down I seem to be OK with my symptoms. If I sit up they flood and overwhelm me.

85% of HG patients have relief by week 14. I pray I am in that 85%.