Thursday, December 24, 2009

Merry Christmas

Merry Christmas everyone!

I'm so excited that it's finally here! Thank you God for sending a beautiful baby boy with the infinite power to save us! As much as I am in pain and am having a hard time in life, I can rejoice and find joy in the Lord.

He is good!

I hope everyone has an amazing Christmas. It's wonderful to find joy in life's little moments. I am going to enjoy this time with my family and friends and save the suffering for later.

Monday, December 14, 2009

Applying for SSD

I understand that there are those who may take advantage of disability, but that certainly makes it tough for those of us who really need it!

I completed the 4 hour online application about 3-4 weeks ago. I can't believe the information they needed. It took me so long to fill the forms out, and I was exhausted after I was finished.

About a week ago, I got a new questionnaire in the mail. It was a 10 page form that repeated several of the questions I had already answered in the original application. I also got a second form that just listed 10 questions that I had to answer, further repeating information already offered by me.

I just got home from a doctor's appointment with my general physician, so that she could examine me and fill out the 10 page form they sent her! Will it ever end?

I've been told that the process was time consuming and frustrating, but I guess you never realize until you go through it. Venting just now sure made me feel better about it, though. Thanks for listening....

I have done everything I can on my end for the SSD offices. I guess I just wait for them to send me more information or more questions now. It will be all worth it if I get approved. The bills/debt are starting to take their toll on us.

I have increased my Amitriptyline to 20 mg from 10 mg (as per my neurologist) to help me sleep better at night. I'm still taking a while to fall asleep, but it has been helping me get some sleep. Maybe my body is getting too used to it. I see my neuro again in early January, so I'll revisit this then.

My every day headaches have gotten worse. Could be the weather, added stress of the holidays? It also seems as if the Treximet doesn't work as quickly or as well as it has in the past. It's been a little over 6 months since the first concussion, I wonder what it all means.

I'm still solid in my faith. God has been doing amazing things to and through me! I know that what I have is just the PCS, and that one day, it will be gone. Hopefully I can keep this peace. The prayers certainly help a lot!

Wednesday, December 9, 2009


I just got interested and did a little online research. I'm going to pass along the links, but I'm not sure about them. I'll continue looking and maybe we can share what we find.

I went through a little at a time, take your time to sift through. I don't know what you've tried, but I'd be interested to know.

I'm having more difficulty falling asleep and staying asleep lately. I'm also having more trouble with my daily fatigue. I think my meds are wearing off their effectiveness. I've also had a migraine for 3 days- aaarrrrrghghh!!

Monday, December 7, 2009

Update time....

I haven't written in a while, so here's an update of what I've been up to:

There was a time when I just felt so overwhelmed with everything and felt like no one really understood what I was going through. I wrote this blog then and was struggling to find some sort of connection with someone. Through the PCS message board, and some other events I have figured some things out.

I'm not better physically at all, but I am better in so many other ways. Although my symptoms have not improved, I am on several good medications and my attitude has changed.

Of course I still have bad days and outbursts. I even get mad and frustrated with God here and there.

I have been focusing on success and not dwelling on what I feel. I can share with you some of the things that make me happy, and maybe you can find it too.

Firstly, My attitude is such that I have stopped worrying about getting better. As much as I would like to be better, it can be frustrating and overwhelming to even think about the future. I cannot plan or think more than a week ahead most of the time.

It's more about managing my symptoms well for me than the bigger picture. I was able to “blah” all my symptoms and feelings out over the Internet in black and white and through that I could see what I was feeling.

I broke my symptoms down one by one and found ways to manage them. I'm managing them well, and I'm able to be happy. I still don't feel good, but I'm happy anyway. I don't know if that makes sense, but it's working for me.

I have an amazing husband who (most of the time) does a lot to help me manage my symptoms. I was waking up with my kids in the mornings and getting them ready for school and on the bus during the first few months after my first concussion. I was exhausted every day and when you are that tired, you are bound to be in a bad mood.

Now my husband gets the kids up and on the bus, and during the week I sleep as long as I need to. I usually don't get out of bed until 11 or 12. Because I can't sleep most nights, or even if I do- I need the extra rest, I feel better when I sleep all I need to. Sometimes people call and wake me up, or on Sundays I get up to go to church, and then I'm feeling junky during the day.

I wake every day with a headache still, but it's much less likely that I get a migraine if I sleep the amount that my body needs.

I am still taking 10 mg of Amitriptyline to help me sleep at night. For the most part it helps, but sometimes I still lie awake in bed and my brain doesn't shut off. It also gives me a lot of very vivid dreams. I see my neuro once a month, and will probably address that next month when I see him.

I take Treximet for when my headaches become migraines. It works amazingly! It has been a great thing for me to have this medication. It usually takes my migraine right back down to a normal headache quickly. It makes me tired, so if I am not able to sleep at the time I take it, I may need to take a second one later, because the migraine might come back if I don't sleep it off.

I also take B12 every day. My physician recommended it for the twitching in my arm, and after a few months, the twitching has stopped.

I've been still struggling with my energy level during the day. My neuro gave me Nuvigil to take during the day, but every time I take it, I can't sleep at all that night. He's going to try Provigil now, I'm just waiting for a pre-auth from my insurance. Even when I wake up late, I only last until around dinner time, and then I want to crash.

My faith in God wavered quite a bit during the first 4 months or so of this. I couldn't find that connection with Him that I had before all this happened. I don't know if I was mad at Him or frustrated with Him or what. I just know there was a tremendous amount of distance between us.

When I went into the hospital and was having my central apnea episodes, there were many moments that I felt as if I was going to die. My husband was praying and crying by my bedside, and it really looked like that was going to be it.

The apnea stopped and I went home with really no explanation. I had it happen again a few times when I was really exhausted a few months later, and that's when I had my big epiphany. While I wasn't able to breathe automatically, I could still breathe manually. It was as if someone smacked me on the forehead and I had a giant “duh” moment.

If God wanted to take me, He would just take me. There wouldn't be a struggle. I wouldn't have to choose between sleep or breathing. This apnea is truly from satan. At that moment I really found peace. If satan was attacking me, I must be worth something to God.

Since that moment, I've kept a tremendous amount of peace and it hasn't gone away. I celebrate the things I can do, and try to manage my symptoms the best I can.

Like I said, I still feel bad physically, but I am able to live happily anyway.

You know how people ask you how you feel all the time, and you don't even know what to say to them? I started answering “happy, I feel happy” instead of any other thing I could say about my physical wellbeing.

I really believe it has so much to do with attitude and focus. I choose the things I do, and I know that when I choose to do something it will affect me physically. I do the things that I really want to do, and everything else gets a “no”.

I know that God can make me better if it's in His will, but that doesn't seem to be the case right now. I've found that there have been amazing things happening through my illness. I wouldn't be as bold as I am now if this hadn't all happened. It's given me a platform to reach more people in ways I wouldn't have had the courage to reach them before.

I am better mentally when I stop swimming in ideas of what this could be, and just accept it for what it is. I have the joy back in my life now. I did lose it for quite a while, though.

I guess I am not really a success story, b/c I am not healed or better physically. I have found success in living with PCS, though, and managing my symptoms (most of the time). I still have days, weeks, or moments where I have a bad attitude and I cry and throw a fit out of frustration.

Sometimes my husband will say the wrong thing, or something will come out wrong and I feel like a burden. No one really understands this, except people who are going through it.