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Saturday, June 30, 2012

Drop A Love Bomb!

I recently realized that I never posted about this wonderful group of people. Almost two years ago I wrote a post called "30 Things You Might Not Know About My Illness-National Invisible Illness Awareness Week". The next morning, I woke up and found that my email was flooded with comments on that blog post. I got on my blog and was speechless. I had over a hundred comments on that one post. Where were all these comments coming from? Several people posted in their comments about a love bomb, but I didn't know what that meant. As more comments came in that day and week and month, I was just speechless once again. There were almost 200 comments on that one post. I was in tears as I read the comments that day and the days that followed.

I don't remember when I finally figured out where all the comments were coming from. These people are part of a group called "Love Bomb (or Drop A Love Bomb)".

People from all over the world participate in encouraging people every week through this website. Their motto is, "We change the world every week, in just five minutes". People that are a part of love bomb nominate other people that need some encouragement. Every week, they pick one blog or person to "love bomb". Then, they go and leave encouragement in the comments. Leaving a comment takes less than five minutes, but these comments really change the world.

Two years ago when they left comments on my blog, I didn't have many followers. I thought that only people who knew me in person read my blog because I hadn't been blogging for long. I didn't really see how my blog made a difference or made an impact. I definitely didn't think people all over the world would read it.

To hear from hundreds of people that what I'm doing really IS making a difference, is incredible. They encouraged me to keep going, to keep spreading awareness for this disease, to keep trusting in God, and to keep sharing my story and faith because it is making a difference and helping people. They said that God is really using me. To hear that from people literally all over the world was so encouraging, and still is today. I've never felt more inspired to keep sharing my story and faith.

Even to this day, if I need encouragement, I go and read those comments. They still encourage me.

I wanted to tell you about them so that you might join them in encouraging people. It takes literally less than five minutes a week, and you can do it from your computer or phone anywhere. They really made a difference in my life and continue to make a difference in other people's lives. You always hear negative things on the news about crimes, or bad things people are doing. But there are still good people who are doing great things. I wish the news would show more positive things like this.

Their website is Drop A Love Bomb (http://dropalovebomb.com). You can partner with them to get notifications each week of the next love bomb mission. They will email you the next mission!

If you want to read where they posted all the comments on my blog, click the link in the next paragraph, or go to the top of my blog and click on the post "30 Things You Might Not Know About My Illness-Invisible Illness Awareness Week"

Here is the link to the post where all the comments are on my blog! "30 Things You Might Not Know About My Illness-Invisible Illness Awareness Week"

I'm so blessed by and thankful for these people! I feel very honored that they chose to love bomb me. I can't thank them enough. I'm sorry that it's taken me so long to give a proper thank you to the people at love bomb. Thank you so much!!! I will continue to support you!!

"So encourage each other and build each other up, just as you are already doing." 1 Thessalonians 5:11

Wednesday, June 27, 2012

2nd appointment with pain management doctor!

My 2nd appointment with the pain management doctor Monday went great! It was a quick visit which is always nice.

As I was waiting to be called back, a lady dressed as the statue of liberty came in...apparently she was from a physical therapy company and was bringing info to this doctor's office, but I'm still not sure why she was dressed like that. It was funny though! The lady in front of her to check in said, "introducing your next patient, the statue of liberty!" It was really awkward but funny to watch. So that was exciting!

I was called back really quickly. There is a main doctor, and then two PAs that work there. The first visit I saw a PA and the main doctor. But for follow up visits they just randomly assign one doctor to see you unless you request to see a certain doctor. On Monday I got the main doctor which was good!

Since the extended release medicine that they first put me on wasn't really helping and causing more side effects, they put me on a different one. I felt bad saying that it wasn't really helping because it was a strong medicine (morphine). But they said it's not a big deal, and I shouldn't feel bad. That's why they have different medicines. Not every medicine works for every one. So they switched me to an extended release that's a little stronger than the one I was on.

They left the breakthrough medicine the same since that still works well. Hopefully this new medicine will work better so that I don't have to take as much breakthrough medicine!

The pharmacy we use has been out of the medicines I need for the past 3 times. And it's not like they're uncommon medicines. So on Monday after I left the doctor I went to drop off the new prescription. I got there and they said they didn't have that medicine. Of course. They said the medicine is a new one, but they also just reformulated the medicine so they didn't have the new one. So I asked if he would call and see who had it. Two out of the three pharmacys around were out. The one that had it was on the other side of town, and it took about 30 minutes to get there. Once there, they told me it would take an hour for the medicine to be ready. At the pharmacy we usually use, the wait is never over 30 minutes.

So I had no choice but to wait for the medicine because it was far from our house and it wouldn't be worth having to come back that night. It was actually really close to where we used to live. It was so busy around there so I decided to go to Sonic to get a drink and hang out there till the medicine was ready.

I headed back to the pharmacy after an hour, but they were super busy and I still had to wait 30 more minutes in line. The doctor gave me a coupon for the medicine and we are so thankful he did. I guess since it's a newer medicine there's no generic so it's really expensive. For a month's supply it was $112 dollars! Wow. I wasn't sure if the coupon would actually work because a lot of times there's a catch to it. But all I had to do was activate the card which only took 10 minutes, and then it worked! All we had to pay was $15. Thank you to the best doctors in the world!

The doctor's appointment only took 45 minutes, and then it took 2 and a half hours to get the medicine. It was crazy and frustrating, but everything is good now and we're so thankful for the coupon for the medicine. We can also use it up to 12 times! I didn't even know something like that existed and actually worked.

I go back to the pain management doctor in a few weeks again to see how things are going. They said that we can call 24 hours a day if we really need something! I'm so thankful for them!

Sunday, June 24, 2012

Update since pain management appointment!

So how have I been doing since my first pain management appointment and starting the new pain medicines? I've been doing pretty good! Last week I was able to do VBS, and one of friend's parents were out of town so she stayed with me last week! We also watched the Thunder games which went pretty late at night. I've been on the new pain medicine for about 12 days.

Tomorrow is my 2nd appointment with the pain management team. I've never been so excited for a doctor's appointment before! I really love these doctors.

Even though I've been able to do more since starting the new pain medicines, I've been having a lot of side effects from the extended release morphine, and it's not helping as much as I thought it would. I'm still having to take lots of extra medicine for breakthrough pain.

So tomorrow I will discuss this with the doctors and see what they want to do. It seems like the morphine is not helping enough to be worth taking because of all the side effects. But, it could just be that it will take longer for my body to adjust to this since I'm getting constant medicine. I've never taken anything like this so I'm not sure what's normal and what's not normal. They might decide to increase the dose, or just change to another medicine. Thankfully, they started me at the lowest dose, and we have tons of other medicines that we could try. At my first appointment they said that since I'm so sensitive to medicines, that if something isn't working or causing lots of side effects, we'll just start over and find something that will work. They said that it's not a big deal and we'll do whatever it takes to find a combination of medicines that work.

The goal is to get me to where I don't have to take extra medicine for breakthrough pain. We want to get to the point where I just need the long lasting medicine, which right now is the morphine, for my pain. But right now I'm still having to take a lot of the extra medicine.

The doctors will do whatever it takes to get my pain at the lowest level! I'm confident that we will be able to. It might just take a while to figure out what medicines will work best for me. I'm so thankful for these doctors!!!

Saturday, June 23, 2012

Vacation Bible School!

This past week was VBS at church and I got to help! I was in a couple of the plays!

Before I got sick I was in plays and musicals. I did community musicals and then some at school. I took acting classes and voice lessons. I really miss performing! But I was so excited that they asked me to help with the VBS plays!

The theme of VBS this year was Jonah (You can run but you can't hide!). The first play I was in was a black light play. It was right before Jonah got swallowed by the whale! He had been thrown off the boat and was in the ocean. Our part of the play was the sea creatures under water!

This is what we had to wear for the black light play so we wouldn't be seen. Black pants, long sleeve shirt, socks, gloves, and a mask.


The whole outfit. We looked like ninjas!
I got to be the jellyfish! The pictures aren't very good because we were moving, but you get the idea. I'm the green jellyfish in the middle. There are two fishes on the left, a sting ray, then me, then a school of fish, a clam, and seaweed and coral. It's hard to see all of them in the pictures but they are there!







Then after the black light part, Jonah came and a whale chased him around. The whale was a balloon thing on sticks that people carried up and down the isles so it went by all the kids. It was huge and the kids loved it!


I didn't take this picture. I got it off facebook. That was right before the whale ate Jonah. 
The next day I was a villager in the town of Ninevah! It's hard to see me but I'm in the red dress. Sorry, the pictures are blurry.





It was so fun helping at VBS. I'm so glad I got to! Last week was a crazy week with VBS and then the NBA finals. Unfortunately the Thunder lost, but we are so proud of them! They've only been here for 4 years and already made it to the finals. They are so young, but so humble and respectful, even when they lose. When they came home yesterday, 5,000 people went to the airport to welcome them home. I love how they have united our state and country. A survey said that 49 out of the 50 states wanted the Thunder to win. The only state that didn't was Florida where Miami is. How amazing! We can't wait until next season!!

Thursday, June 14, 2012

Great and encouraging pain management appointment!

(Sorry, I know this is really long, but it's worth it!)
Tuesday I went to a new pain management doctor! We've been waiting for this appointment for about 2 months now. Many of you have been faithfully praying for this appointment. Thank you so much! I know you're anxious to know what the plan is.

About 8 months after I was diagnosed with Lyme, I started seeing a pain management doctor at Children's hospital. All they did was put me on Amitriptyline which is an old antidepressant that is used for pain and sleep. It is the only thing that has really helped me sleep. And it helped my pain. I didn't see the pain management doctors at Children's for very long since the Amitriptyline was helping. I'm still on that medicine and it still helps me sleep most of the time!

Since then, I haven't really needed just a "pain management" doctor. My pain has mostly been controlled with general medicines such as Loritab or Tramadol. But this bone pain that I've had since the beginning the April has been very intense and so different than the "normal" pain I've had since I got sick.

So my primary care recommended that I see a pain management doctor. I'm so glad that he did! At first I was nervous. Going to a new doctor is very scary. You have to explain everything from the beginning again, and wonder if they'll believe you or question you or your diagnosis. I was also worried about what they would say since we still don't know the exact cause of the bone pain. But Wednesday went way better than I expected!!

We left our house at 8 Wednesday morning to get there for my 8:15 appointment. We walked in and were greeted by the ladies at the front desk wearing their Thunder shirts! We were wearing ours too of course since it was game day. That started everything out great!

We only waited a few minutes in the waiting room before being called back. The nurse took my vitals and then explained what would happen in the next couple hours.

The PA came in and went over my history. She was so nice!! We went over everything from the beginning. She never once questioned the fact that I had been diagnosed with Lyme, and she seemed knowledgeable of it. She never asked where I got bit by the tick. She listened to everything we said. Also, she seemed to know about the treatments I do in Nevada. How amazing! She was so encouraging and easy to talk to. We told her that she seemed to know a lot about Lyme, and she said that she was a sleep doctor before becoming a pain management doctor. She said that she saw lots of people with Lyme who had sleep problems, and that they see people with Lyme for pain problems. She said she definitely doesn't know how to treat it, but she knows the damage it can do. We told her about the alternative treatments I've done and she was totally okay with that. She actually was very happy that I'm doing those.

She talked about the depression that comes along with chronic pain. She said, "it's okay to be broken because there is only One who is perfect and whole" as she pointed up to God. She said that if she was 19 and had been in pain all the time for 3-5 years, she would not be happy or in a good mood. But she said not to let the disease become you. That's the important thing. It's okay to admit that it's hard, but you have to stay above it.

We also went over all the medicines I've tried. Once we had gone through most of my history, she laughed and said, "so the thing we need to know about you is that you are so not textbook"! We said, "no way! I like to make things difficult and challenging". We all laughed.

She said that given my history and the examination that she did, she thinks it's possible that I have obstructive sleep apnea. All the pain medicines and sleep medicines could be causing me to not sleep well since the pain medicine also suppresses your breathing just a little because it relaxes you. She said it's nothing to worry about, but if my sleep doesn't get better with the new pain medicines, we should look into that. She reminded us how important quality sleep is to manage pain and she doesn't think I'm getting that. I totally agree. So we'll watch what happens with my sleep. She said that the doctor will probably want some overnight testing down the road if it doesn't get better. But that's not our priority right now.

Once we went over everything, she went and got something called the Alpha-Stim microcurrent therapy. It's similar to a TENS unit, but they see better results with this treatment. It can help pain, fatigue, anxiety, nervousness, and almost anything from what it sounded like. I really don't know much about it yet, so if you want to know more then you can google it until I learn more! The Alpha-Stim was a little hand held machine with two wires that she clipped on to my ears. As she turned it up, it felt like little pin pricks and then I felt like I was on a boat. She said she could see my head moving. That's all normal! So we turned it down a little and then I couldn't feel anything! I think I had it on for about 45 minutes. I didn't see a difference, but she said sometimes it takes several treatments. So we will think about trying a few treatments of that.

She went to talk to the main doctor about my history and then they both came back in to discuss the treatment plan. The doctor walked in and was also wearing his Thunder shirt! He said that he is positive that I have fibromyalgia. We always knew that was a possibility, but he confirmed that. He said that they might want to try another medicine for that later, but he only wants to do one thing at a time with me since I'm so not textbook. That is fine with us! We don't want to overwhelm my body anymore.

He considered doing a pain patch, but said that with it being summer, he thought pills would be better so that I can swim and so that I won't have to worry about it falling off if I get sweaty. So he started me on constant extended release morphine.
The oxycodone that I have been on since the bone pain started has helped, but it's just a roller coaster because the medicine wears off several hours before I can take more. So with the extended release, I take it every 12 hours and it's constantly giving me medicine. He also is giving me oxycodone for breakthrough pain. So if the pain gets bad and I need a boost of medicine, I can take the oxycodone as needed.

They said their goal is to make it to where I can live life normally despite the reality of whatever is going on physically. I told them that I've tried to wean myself off of the oxycodone a few times to see if the pain was better, but the pain is still bad enough to need it. I also told them that in the mornings, I wait as long as I can without taking pain medicine because I know it's not good to take. But that causes the pain to be harder to get under control. He told me I need to take the medicine. I need to be able to enjoy life and be my age again instead of sitting at home because of the pain. He said no one wants to take medicine, but we do what we have to do, and right now you need to take this. We will make the most out of the situation that we are given. I won't need this forever, just for a while.

They also recommended several supplements to take. They were very happy that I'm already on Vitamin D. I love that they want me to try non conventional treatments too!

On the summary page that they gave us it says,

"Must accept that pain will likely never totally go away and therefore:

  • Learn to adjust and pace activity
  • Must learn it is "okay" to be broken
  • Must find meaning and purpose in life despite brokenness 
  • Must not push activity beyond capabilities" 
They also recommended reading the book "Kitchen Table Wisdom" by Rachel Remen to help find meaning in everyday life. 

I love that these doctors are just as much wanting to help the mental and emotional parts, not just the physical. I love that their goal is to help me actually live life despite whatever is going on. I am so thankful for these doctors! 

I go back in a week and a half to see how the medicines are working! Thank you for praying!!!!

Wednesday, June 6, 2012

Decorating the neighborhood gates for our neighbor who happens to be a Thunder player!

The OKC Thunder is going to the finals! We are so proud of them!!!!

One of the Thunder players lives in our neighborhood, so we decorate the gate for when he comes home!!

Tonight we had a party at the gate while decorating in the rain. It was great!

Tuesday, June 5, 2012

Sunset at the beach

While we were at Gulf Shores, we drove to the end of the peninsula we were on to see the sunset over the water. It was beautiful 

This looks like it should be in Africa, not Alabama! 






"God is our refuge and strength, 
    an ever-present help in trouble. Therefore we will not fear, though the earth give way and the mountains fall into the heart of the sea, 
 
though its waters roar and foam 
    and the mountains quake with their surging" Psalm 46:1-3





“Be still, and know that I am God; 
    I will be exalted among the nations,
    I will be exalted in the earth.” Psalm 46:10








Friday, June 1, 2012

Dedicated fans

Just skyping the Thunder game to my dad and brother (and a couple others) in Africa last night. They woke up around 5am to watch the game!


Me and Tacy