How am I really doing?

I wrote this entry a little over a week ago and didn't post it because I guess I feel weird writing something quite personal on the internet for anyone to read. I was thinking about it today and realized that I need to be reaching out to people for prayer for my health and this is a great way to do that. If I'm not sharing my weaknesses and struggles I'm not giving others the ability to know how to pray for me. At this point, I can't afford to miss out on that opportunity.

I started taking this new probiotic (I mentioned before) this week. It's a bit strange eating over 900 billion live bacteria a day, but if it works then I'll do it. On one hand I would really like for this probiotic to work, but since the cost is $150 a week, part of me would like for it not to. Talk about being between a rock and a hard place. When I start to feel overwhelmed by all of this I turn my eyes to God and tell myself to take it one day at a time. He has brought me this far in life and there is no need to worry how I will make it through tomorrow if I don't get myself through today. Last night was quite interesting too. I had a dream that I was having knee replacement surgery. I woke up in the middle of the night with horrible arthritis in my left knee and muscle spasms shooting up and down my leg. For the last couple of days my joints have been very achy and giving out.

Thank you for continuing to read our blog. It means a lot to have friends and family interested in our lives. More importantly, having a support system of people caring and praying for us.

In case you are keeping up...

Today we discovered two of Abby's bottom teeth poking through. It's interesting how their arrival made a grand entrance into her mouth! If you read my post from a few days ago, you will know that Abby has been feeling great up until this point. On Friday she decided to stop eating which was abnormal and slept in till 9am Saturday morning. Very abnormal since she gets up at 7:15 on the dot every morning. Yesterday she slept a lot too, so last night I decided to take her temperature. I try the ear thermometer, but it is never consistent for me. One reading says 93.5º while another says 95.6º and when I try in my ear it says I'm running a fever. So, I decided to go for the gusto and take out the rectal thermometer. Everything was going well, Abby seemed ok with this form of temperature taking until a blast of diarrhea shot the thermometer across the room. As you can imagine, this was a very messy experience for Abby, my hand and the thermometer! I thought it was hilarious though. (I tell myself, I will take these messes any day over dealing with an adolescent teenager.) After a bath, some Tylenol, and an early trip to bed, she woke up at 7:15 with two pearly whites saying hello.

Shower for Esther and Ashley

Today I helped throw a baby shower for my sister, Esther, and her baby to be, Ashley. It's fun preparing for another member of our family to arrive. Thought I would share some pics of my first red velvet cake. Probably the sweetest cake you will ever taste.

living with uc...

After lying awake since 2:3oam I decided to get up and make some use of the time... I'm awake because my doctor has upped my dosage of prednisone. A steroid with many side effects, one being insomnia. My doctor increased the medication because shortly after Christmas I came down with the stomach flu and it flared my uc. It has been an interesting journey with this disease so far and I'm curious to to see where it will take me over the next several months. I haven't really talked about it much because since October I have been in remission. The remission came thanks to the high dosage of prednisone I was on. Prednisone is not a drug you can take long term. As I said, it has many side effects which are harmful to the body. I recently had a bone density scan and learned that my bones are breaking down quickly. I am borderline osteoporosis. Throughout this time, my doctor has been weaning me off the prednisone and trying to introduce other drugs which are used long term. Unfortunately, my body doesn't tolerate these drugs well. In early December I started a new drug called 6-mp, an autoimmune drug that works by suppressing the immune system. I was not eager to start taking it as I learned more about the risks, such as cancer and liver damage, but at this point the risks taking the drug out weigh the risks not taking it. 6-mp can take up to three months before patients respond to it. In the meantime, I decided to do more research for alternative treatment options. I know there are a lot of probiotics and natural remedies out there, it's just a matter of trial and error. I emailed a specialist I saw back in September to discuss these other possibilities. He told me to make an appointment to see him. My mom and I drove down to Yale to see the specialist and get some answers. The doctor explained that if the 6-mp did not start to work then he would have me try my last drug option which is Remicade. The thought of going on Remicade scares me because of what it does to your body. If my body does not respond to Remicade then he said I would have to have surgery to remove my colon. Having my colon removed would cure me of the disease. That sounded pretty drastic. We discussed various probiotics (good bacteria placed into the gut) which he said I could try, but are costly and could not guarantee would work or be covered by insurance. After hearing my options, I decided that I am ready to try anything before having my colon removed. I am going to start taking VSL#3 and fish oil pills in addition to the 6-mp and pray it works.
As of right now, I feel great. Although, that is because I am still on the steroid. I was thinking today, that it is like I'm riding on a spare tire. The longer I am taking the steroids, the weaker my bones become, so the need to find a replacement is critical.
I thought I would share this with you so you could be praying for my health. Sometimes I feel fine and forget it is really an issue until I flare up or experience drug side effects. I'm so thankful for all the people already praying. My mom has been my biggest advocate and prayer defender with this illness. She has helped me pursue different treatments and supported me through a lot of emotional difficulties. It's because of all the prayer that I do feel such peace. I believe God has an amazing plan for me. I just need to be patient enough to find out what that is.

Abby Update

Abby will be 8 months on Saturday. Man, time flies! I must say, there is nothing in the world than can prepare you for parenting. It's truly an amazing experience and I praise God everyday for blessing us with a beautiful, healthy baby. I can't stop thinking about what a miracle it is to have a child. I try to savor every special moment with her because I know it won't last forever. She really is such a good baby. I think I appreciate her happy demeanor all the more since the first three months of her life she wasn't quite so happy. I remember some trying days in the beginning, spending hours walking a crying baby up and down the hall.
She is a great eater. She loves just about anything she eats, including, oatmeal, sweat potatoes, squash, pears, bananas and apple sauce. Although, she has developed a bit of an attitude when we don't prepare her food fast enough. I noticed if I take too long to give her her next bite she will put her chin down and lick the remnants of food off her bib. I laugh at her and she looks up and laughs too. Feeding time has become a time of learning and bonding for us. She hasn't started crawling yet, but I'm definitely ok with it. I know once she can move around life will never be the same, so I don't mind taking it slow. Each day it does seem like she is getting stronger and moving closer to that next step. Another praise is that she hasn't had a cold yet. I'm not quite sure how this has happened considering she has been in and out of play groups and the church nursery with sick babies and I have had my share of illness this winter too. It must be something she inherited from her daddy. In the 3 1/2 years we have been married I can only remember Brian being sick once and that was just a cough and runny nose. Of course, this is nothing to complain about! I would so much rather be the one sick than see my family be sick.
Life seems to move a lot faster now that we have a child, not quite sure why. Probably because Abby is growing and changing faster than we can keep up. I guess everyone is constantly growing and changing, it's just a matter of taking the time to reflect on it.

What an AMAZING God to serve and what He is up to...

I'm am really touched by this story and brought to my knees at the thought of a Most High God who I am honored to serve. Therefore, I must share it with you and pray it touches your heart as well and brings you to a surrendering point with the most amazing Creator you will ever know TODAY. Please take the time to read, be encouraged, and pray...

www.cfhusband.blogspot.com

Today in CT

Wet winter wonderland.

Abby meets Santa

A lot of Christmas!


















I think I know you! You're Grandpa!


















































Abby made her first trip out to Illinois to visit all of Brian's family, including both sets of great grandparents. Unfortunately, I came down with the stomach flu and couldn't go last minute. I was bummed to miss out, but thanks to Aunt Kristin and the pictures she sent, I was able to see what a good time everyone had meeting Abby. Brian did an awesome job traveling with Abby on the plane. People commented on how good she was throughout the flights. Surprisingly, Brian made it with two good size suitcases, while pushing a stroller and getting a rental car by himself. I'm still amazed.