Chili Cook-Off Update

Will won the 3rd place cup for the chili he entered in the contest yesterday.

Block Party

There is a block party here today. We are busy getting ready and will soon be heading out for the fun. Will has been cooking chili today for the chili cook-off.

Last night I finished William's octopus costume. I have some pictures posted below. I wish you could see the costume as he runs around. The legs wiggle and dangle, and it is so funny!

Now if only there was time for a nap before the big party...

Will and the Big Pot of Chili

My Grumpy Octopus

My Silly Octopus

Our Baby Girl

Adelaide, 33 Weeks

Here is our little girl. She is growing and growing! The last couple of months have been hard on me, but Adelaide is certainly doing well! For those of you who have been wondering, here's the scoop on all things baby.

I had an ultrasound and OB appointment last week. The first question the ultrasound technician asked once she started the exam was, "How big was your son when he was born?" We told her that he was 9 1/2 pounds. Her next question was, "Are you diabetic?" I said that I am not. At this point Will asks, "Just how big is this child?!"

The weight estimate was 5 lbs 10 oz, which is fairly big since I was just over 32 weeks. Adelaide has been putting on more than 1/2 a pound a week! The night before the ultrasound I was lying in bed feeling my tummy and trying to guess how big Adelaide was. I told Will, "It feels like she's about 5 1/2 pounds." Later on I thought, "No way. She can't be that big yet. I'm only 32 weeks along." But, sure enough, the ultrasound said the same thing!

I praise the Lord that Adelaide is growing so well. I have had more trouble than normal with my gastroparesis lately. It has been hard to eat enough food because my stomach cannot digest as much food as I need. There have been many days that I have been on a liquid/soft foods diet. Despite not always being able to consume enough calories at this point in pregnancy, God is growing a very strong and healthy baby inside of me.

Adelaide is growing even faster than William did, and he was well over 9 pounds. The only "complication" now is that Adelaide may come early. My doctor said that because she is getting so big so fast my uterus may reach a certain size and then think it is time for labor. I am supposed to pay close attention to contractions and not just assume that I'm having Braxton Hicks.

I am feeling crunched for time and energy knowing that Adelaide could come so soon. My due date is still 6 weeks away, but I want to be prepared early just in case. I think we do finally have everything we have to have for her arrival. We just got formula and baby wipes this week, and those were the last "must have before she comes" items on the list. I found a pediatrician for Adelaide, and we have finally figured out insurance for her. Now I just need to pack my bag for the hospital, and we'll be all set.

There are a lot of things I still want to do, or that would be helpful to have done, before Adelaide comes. Maybe I'll get my to-do list done, maybe not. If my energy holds out, if Will has time between studies to help me, and if Adelaide waits another 3 or 4 weeks, I think I can get it all done. :)

Today I'm going to see an anesthesiologist at the hospital to get a plan together for labor and delivery. With someone like me, you don't want to show up at the hospital already in labor and freak out every nurse and anesthesiologist on the floor. It's best to talk to them ahead of time so that they know what problems may arise, and to let them know not to worry when my blood pressure goes from 80/50 to 120/80 in a matter of seconds.

I will be starting weekly ultrasounds and weekly doctors appointments just to make sure that both Adelaide and I are doing well. Lord willing, in a month or so we'll have a happy, healthy baby to bring home.

A Rough Several Weeks

Hello Friends!

I know that many of you have been wondering how I've been doing. As you have probably figured (due to my lack of blogging lately), I haven't been doing very well. We've had a rough 6 weeks or so here.

At first I was having constant headaches and migraines. These lasted for about three weeks. I always had a headache, and it sometimes developed into a migraine. Because I'm pregnant, the only pain medicine I could take was Tylenol, which does very little for headaches and migraines. Eventually, with the help of my POTS doctor, I discovered that a large dose of a magnesium supplement helps me. It hasn't completely gotten rid of the headaches, but it has helped to prevent the headaches from turning into migraines. I'm very glad to have relief from the migraines and constant headaches.

As soon as the migraines were under control we made a trip to Georgia for a weekend. It was wonderful to see friends and family while we were there. The ladies from my church also gave me a baby shower while we were down there! It was so fun, and I appreciated all of the help in getting things ready for Adelaide's arrival. If I have energy later, I'll share some pictures from the shower. The trip to Georgia was great, but it was also exhausting. I never quite recovered from it before more debilitating symptoms flared up.

Brain fog flared up badly a couple of weeks ago. The bad kind. The kind where my body is so absolutely worn out that my brain just starts to shut down on me. The fatigue became extreme and I had great difficulty simply answering yes or no questions. If I was alone, I would forget to eat and drink. It just never crossed my mind that I needed to do that. Thankfully, Will's professors were understanding when he needed to skip class and stay home to take care of me.

We made it through the bad days of brain fog. By spending a LOT of time sleeping and resting, and by taking Cerefolin (a specially formulated prescription vitamin made for Alzheimers patients), I was able to pull out of the bad brain fog. A few days later I stopped the Cerefolin, but the severe brain fog came right back. Usually I can just take Cerefolin for a few days and then stop it and be "normal" again. That didn't happen this time, so I went back on the Cerefolin. I'm currently taking Cerefolin daily, and will probably continue to do so for at least the next five months. It's completely safe to take long term for me and for the baby; it's just expensive, which is why in the past I have only taken it for a few days at a time.

Even with the Cerefolin I'm still having more difficulty than normal with brain fog on some days. It is hard to carry on a conversation. It is usually too hard to write emails, blog posts, and thank you notes. It is sometimes hard to follow tv shows and movies. I need to take more breaks from mental tasks, and I have to rest even more than normal, but I'm making it. The Cerefolin definitely helps, and I'm so thankful to have this med that is helpful and safe during pregnancy.

That is the basic update. Life is hard, and it only seems to get harder, but God is gracious and always sees us through these tough times. Will has been a huge help to me, as always. He is such a wonderful husband and friend. William remains my little buddy. Even when I'm sick in bed, he loves to be with me.

Now that I finally have you all caught up on the boring stuff, hopefully I'll have some good days where I can share about some fun stuff! Like my baby shower, Adelaide, pregnancy, Cubbies, and William's octopus costume if I ever get it made.

Thank you so much to everyone who reads my blog and keeps checking in on me even when I'm so quiet for so long. I'm still here. Just been a little foggy lately. :)

My Strength

"My flesh and my heart may fail,

but God is the strength of my heart

and my portion forever."

Psalm 73:26, NIV

Image courtesy of Microsoft Office Online free clip art

Sunday Afternoon

Will asks, "Are you getting sleepy, buddy?"

William's last word: "No."

30 Things About My Invisible Illness You May Not Know

Lisa Copen has started a list called, "30 Things About My Invisible Illness You May Not Know." She and her bloggy friends are filling it out and posting it on their blogs and facebook as a way to raise awareness of invisible illnesses and to spread the word about Invisible Illness Week coming up soon.

For those of you with an invisible illness, you too are invited to fill this out and post it on your blog or facebook. Then go back here and leave a comment with a link to your post. Two of the commenters will receive a prize. Gotta love those blog giveaways! :)

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Dysautonomia, a dysfunction of the autonomic nervous system. Specifically I have been diagnosed with POTS and NCS, both of which are types of dysautonomia. I also have Gastroparesis, Joint Hypermobility Syndrome (formerly called Ehlers-Danlos Type III), Chronic Fatigue Syndrome, a few different sleep disorders, and possibly a Mitochondrial Disease.

2. I was diagnosed with it in the year: Diagnoses came starting in 1992. The most recent diagnosis came in 2007.

3. But I had symptoms since: around 1990.

4. The biggest adjustment I’ve had to make is: It’s impossible to just pick one big adjustment. There have been so many adjustments over the years. Most of them are hard at the time.

- realizing that dreams and plans I had for the future aren't going to happen, or will happen very differently than I had thought!

- getting used to my illness being "seen" when I go out in a wheelchair.

- learning to just lie down when I need to whether I'm in church, Wal-Mart, at a wedding, a restaurant, or wherever.

- giving up the independence of driving and shopping on my own

- learning to let Will help me with basic things like getting food, getting dressed, and showering.

- admitting that I need help from others.

- actually accepting help.

5. Most people assume: that when I’m smiling and sitting in my wheelchair or walking a short distance that I’m doing well physically. In reality, it is hard for me to sit in my wheelchair. It makes me very tired. Walking is tiring, too. It is never easy.

6. The hardest part about mornings are: moving, getting up, getting dressed, and getting my brain functioning and thinking clearly. My body is so slow in the morning. It just doesn’t want to work!

7. My favorite medical TV show is: I don’t watch any medical tv shows. I live the reality of it. When I watch tv it is nice to escape that world for a while!

8. A gadget I couldn’t live without is: Well, technically I could live without any of them, but I especially appreciate my shower stool, my wheelchair, and my walker. They make showering and getting out of the house possible. I also especially appreciate the computer and internet. It is my connection to the outside world and my many friends with dysautonomia.

9. The hardest part about nights are: not being able to fall asleep, waking up often in the night (due to sleep disorders, pain, and temperature regulation issues), never getting enough sleep.

10. Each day I take at least 7 different pills & vitamins.

11. Regarding alternative treatments I: have tried many. Some because I wanted to, others because I felt pressured to. In general, alternative treatments don’t work for someone like me who has dysautonomia. You cannot fix a broken autonomic nervous system. Peppermint tea can ease nausea. A healthy diet is beneficial in a small way. But nothing actually fixes the root problem. Most alternative treatments do nothing, or make things worse. Only God can fix a broken autonomic nervous system.

12. If I had to choose between an invisible illness or visible I would choose: I’d just leave this one up to God. Both are hard, just in different ways.

13. Regarding working and career: I don’t mind that I’m missing out on a career. I love being a stay-at-home mom. I just wish I had the strength and energy to do all the “mom stuff” I’d like to do.

14. People would be surprised to know: how lonely it is living with a chronic illness.

15. The hardest thing to accept about my new reality has been: being left out of activities because I either physically can’t do them or because people don’t think to invite me.

16. Something I never thought I could do with my illness that I did was: have a child.

17. The commercials about my illness: don’t exist. There are hundreds of thousands of people with dysautonomia, but we are all but completely ignored by the media.

18. Something I really miss doing since I was diagnosed is: walking by Will’s side and holding his hand.

19. It was really hard to have to give up: my independence.

20. A new hobby I have taken up since my diagnosis is: crocheting and knitting.

21. If I could have one day of feeling normal again I would: go hiking and camping in Alaska with my family.

22. My illness has taught me: how very, very blessed I am.

23. Want to know a secret? One thing people say that really bothers me is: When someone who is healthy complains about being tired or complains about sickness that lasts only a couple of weeks.

24. But I love it when people: say that my life encourages and inspires them.

25. My favorite motto, scripture, quote that gets me through tough times is: "For we know that our light and momentary troubles are achieving for us an eternal glory that far outweighs them all" (2 Corinthians 4:17, NIV).

26. When someone is diagnosed I’d like to tell them: that life with a chronic illness is hard, but that it can still be fun. There is real hope, and there is real joy in the midst of trials. That hope and joy is found only in the Lord Jesus Christ.

27. Something that has surprised me about living with an illness is: how very hard it is even when it looks easy from an outsider’s perspective.

28. The nicest thing someone did for me when I wasn’t feeling well was: offered help on a regular basis, but even more special - offered genuine friendship as well.

29. I’m involved with Invisible Illness Week because: there is so much that people don’t know about invisible illnesses.

30. The fact that you read this list makes me feel: like you care.