Follow up to "What is Going On"

So here is an update on how Henry and I are doing health wise (in case the posts "What the heck is going on I and II" scared the heck out of you).

Henry has not been in pain, nor needed painkillers in over a week. His doctor and him have figured out that within 3 days of getting off an antibiotic, Henry would develop more lesions and infection. This would force him to be popping hyrdrocodone's throughout the day. Now, he is on an antibiotic indefinitely and is feeling back to normal. He has one more procedure coming up and then we should definitely have a diagnosis (most likely Crohn's Disease).

I am not feeling as bad as I had been feeling. My face in no longer going numb every now and then (a symptom I forgot to mention in an earlier post). However, I am feeling exhausted like never before. I do not like to take naps, but have found that I almost need one everyday. I am working part-time which really helps. However, a couple weeks ago I worked all day for couple days and I sure paid for it during the weekend. On that Saturday I took Ally to her volleyball game then took Ryan to his basketball game. I was feeling so weak and empty. When one of the kids would lean on me, pain would radiate where they were touching me, and the little energy I did have would disapear. The kids have learned to ask me "can I lean on you or are you hurting?" :( Like I stated earlier, I need to take time to nap or at the least, relax for a least an hour everyday. I will soon be making a doctors appointment to see if there are different avenues I could pursue to help with the exhaustion.

On that note . . . WOW, the doctor bills are flying in. In the last week I have paid over $500 in doctor bills. And I'm sure more are on the way. But you know what? We are blessed. We have health insurance (which many people don't) and we are blessed to be able to pay the bills. God will provide.

I only put this picture in because Charlene said she doesn't like posts that don't have pictures. Enjoy ;)

Ryan Plays Basketball

Ryan really enjoyed playing basketball. We signed him up in January and he played 7 games. His team was the Wolf Pack. His coaches were great. They made sure every player played an equal time and that each player actually got to get the ball a few times. This was a really good thing because there were 3 or 4 kids on his team that wanted to be the hero. They would not pass the ball and they would tell the more passive kids to pass them the ball.

Ryan struggled with offensive. Like I stated in the previous post, my kids are very passive. Turns out that basketball is a very aggressive sport. Ryan would not be one to get in the mix of players and fight for the ball. Add this to the fact that some of his teammates were not great at passing (sharing) the ball. However, during one game, one of Ryan's teammates passed him the ball and he made a basket! It was awesome.

Now Ryan loved basketball because he was awesome at defense. You should have seen the hustle on that boy was he was told to guard a player. It was awesome to see him play play with such determination.

He was not going to let anyone get around him.

Here he is fighting for the basketball.

Here he is ready to guard.

I love this picture. Look at everyone's face. It is like this is the shot that determines the national championship. Even the coaches are leaning over trying to see if the ball is going to go in the basket. Look at Ryan jumping in the air.

I am glad he had a chance to experience playing basketball. We did not sign him up for the next session. Instead, he is moving on to baseball. Stay posted for those pictures.

Ally is in Volleyball

Well Henry's dream has finally come true. Ally has joined volleyball. I don't know why this was Henry's dream. But has always said that he wanted his daughter to play volleyball. Go figure. She began volleyball in January and has played in 7 games. Her team is called the Angels. Ally enjoyed it so much that we have signed her up with the same team for another session.

Here she is waiting for the serve.

As a team, the girls are working on returning serves. It is difficult for them to judge where that ball is going to land. So, they will often set-up to return a serve just to miss it because they were to far back or the ball went behind them. However, in our last game, they returned the ball at least 5 times, which was huge.

Ally quickly learned how to serve. When she was in soccer everyone said she had a power kick like no other. Well, it seems that she also has a power arm. She is really good at serving. In one game she scored 6 points on serves alone.

Ally really enjoys volleyball, as you can see in this picture.

You know my kids are a lot like me and Henry. They are very passive. Which is a great trait. However, when it comes to many sports, you must play aggressively. When Ryan and Ally were both in soccer, we would see their passiveness on the field. They would not "fight" for the ball. They would kick the ball if it came to them. However, they would not get into the mix of kids and try to get the ball. Volleyball is not an aggressive sport. Everyone has their position on the court and everyone has a turn to serve. I think this is why Ally enjoys volleyball. Everyone gets a turn and you don't have to "fight" for it.

What is Going On? (Part II)

So Henry has not been the only one to be dealing with the stresses of health. If you read the previous post, you see that Henry (and our family) were dealing with more than his fair share of health issues.

Well not to be out done, my health decided it wanted it's fair share of attention. Now I don't tell everyone (especially my mom, because she often starts crying due to my health), but I have felt like crud (a family friendly word) for the past 3 to 4 months. I mean I have felt bad. Constantly tired. Constantly achy. No energy for anything. You know, just feeling all around MS'y. I saw my neurologist in the beginning of December and he was concerned that I am seeing an increase in multiple sclerosis symptoms. He increased my medication for fatigue and ordered an MRI to see if there are any new lesions on my brain which would indicate that my MS is progressing.

At the same time that this is going on (don't forget Henry's stuff) I had to have 2 follow ups with my primary care doctor because blood work from my physical, in June, shows a steady decline of my platelets. So, I was finally referred to a hematologist to see if he could figure out what was going on. I didn't think anything of it until I had to make the appointment and discovered that the doctor is a hematologist/oncologist. Heck, they just call him oncologist. Damn. Really? This is where we are now? So I go to that appointment and he orders a plethora of blood work and an ultrasound of my liver, kidneys, spleen and anything else in there. He explained that a drop of platelets can indicate a cancer and he wanted to make sure everything looked okay. Here we go.

A lot of praying was going on in our immediate and extended family. Like I said in the previous post, it was a rough holiday season for us. You can not help but fall into a depression. I started thinking what if this is our story? What if my kids lose both their parents at a young age? I have a friend whose mother died when she was 19 (from Lupus) and then her dad (from a heart attack) when she was 20. They never met their grand kids. Was this what my kids would be facing? So Henry is in constant pain with no answers and I have doctor appointment after doctor appointment with a bunch of blood work in between.

My mom kept telling us that we were handling everything so well. I think we did. Because, we just have to believe God has a plan. Everything we go through is for a reason and God is in control of all of it. We still were in a depression (I sometime think I still am), but I know God has a plan.

So for the good news. MRI came back showing no new lesions. Ultrasound came back with my spleen slightly enlarged, but not to a point of worry. I will see my hematologist (let's not call him oncologist) in 6 months. I don't have to see my neurologist for a year. And my last blood work showed my platelets went up a little bit (yay).

I decided to become proactive about my MS and did some internet research. Found that milk may increase exacerbation's in people with MS. So I cut out my morning Greek Yogurt (not easy to do), my cheese sticks, and my cups of chocolate milk. I am still working on not eating ice cream. But, the first day without milk products I felt so much better. I have also stopped sleeping with an electric blanket and taking hot baths/showers (even though I love them so much) because they also increase exacerbation's. I am still low in energy, but not feeling terrible.

I have gone to working part-time since I was feeling so bad. I am enjoying having some extra time with the kids and being able to do a few errands/chores before they get home from school. I don't know if I will work next year. I don't know what is the best for me and my family. I will definitely be praying for guidance.

Hope I didn't bring you down. Things are definitely on an up swing for me and Henry.

What is going on? (Part I)

So, if you have talked to us lately, you know that Henry and I have way more than our fair share of medical issues.

Henry has been a medical mess since Thanksgiving. Without giving out all the gory details, Henry is in the middle of being diagnosed with Crohn's Disease. I don't think I have discussed, on the blog that Henry also has an autoimmune disease. Everyone knows that in August of 2009 I was diagnosed with Multiple Sclerosis. Well, about 6 months later, Henry (finally) followed up on some back pain and neck stiffness he was having. Well, after much testing he was diagnosed with ankylosing spondylitis. Short explanation of this is that it is a form of arthritis where his spine is trying to fuse together. So, he takes a shot once a week and this prevents the disease from progressing.

If we were smart, we would of fully researched ankylosing spondylitis. The reason I say this is because around Thanksgiving Henry started experiencing some severe pain. After a few doctor visits Crohn's Disease was mentioned and I started doing some research on the internet. I found that ankylosing spondylitis and Crohn's disease have the same "marker". Roughly 10% of people with ankylosing spondylitis will develop Crohn's. We should have known that Crohn's was a possibility.

So here is Henry, struggling with digestive issue since Thanksgiving. He has had difficulty sitting or walking. He has had 2 biopsies, one which was done under anesthesia. He takes hydrocodone's supplemented with Advil, every day. He was a mess from Thanksgiving to a few days after the new year. He could not physically get to work some days and other days he could only get though 1/2 a day of work. He would spend some days in bed, all day. He was in constant pain for over a month. Some days he would try to "fake" that he wasn't in pain. But, how can you fake it? He would snap at the kids or 1/2 way through an errand he would be in such pain that we would have to come home. Everyday was a constant struggle for him. And for me. And for the kids. Talk about spinning into a depression. It sucks to be in pain. It sucks to watch someone you love in pain. It sucks (for the kids) to see their daddy in constant pain and not really understand what is going on. You can't fake normal. Henry felt really bad about everything going on. But I told him that we are going through it together - For richer or for poorer, In sickness and in health, Til death do us part.

With that said, Christmas kind of snuck up on us. This was the first year that we decided to hold Christmas at our house. Henry was not physically able to pull the decorations down from the attic. He did help put up the Christmas tree. We had to skip putting Christmas decorations up outside. We had planned to go to the River of Lights, starting our own Christmas traditions now that we wont be traveling for Christmas. However, Henry was in such pain that we could not go. When I explained all of this to a friend at AWANA he asked if it would be okay to tell Henry "I heard your Christmas was a real pain in the butt." Pretty funny in hindsight.

Around the new year Henry started feeling better. He was healing. For 2 weeks Henry was back. You could just hear it in his voice. The past few days he has started hurting more and definitely slipping back a little bit. He has had another test, basically an ultrasound/x-ray of his digestive track. He has an appointment with a gastro-internolgist this week. He will have a colonoscopy some time in the near future. We are trying to change his diet and stay clear of all nuts and seeds (tomatoes, cucumbers, popcorn, corn, green beans, and a whole lot more). We are also trying to stay away from tomato sauces (due to the acid). I say try because it is hard to break old habits.

So what is going on? We are still trying to figure that out.

Christmas 2011

Random Pictures of Christmas Eve and Christmas morning

Ryan Finishes Karate

Ryan took a karate class this last semester. He enjoyed it and it was really good exercise. The last class was a ceremony class where the students could show us everything they learned. Afterwards, the students received an award. Of course, I don't have to say that Ryan put on a performance for everyone.

Ryan showing a punch.

Ryan being put into a hold.

Ryan getting out of a hold.

Ryan ready to attack person who put him in hold.

Now Ryan's turn to put a peer in a hold.

When the other student got out of Ryan's hold and turned to attack him. . .

Ryan put his hands up and screamed like a girl.

And here is Ryan receiving his award.