You CANNOT do it alone!

Do you ever feel on your own island? I thinking today while laying on my couch, how lonely I feel. Why? Because no matter I share my pain…I get blank stares! I almost have the words memorized that I “usually” here – “oh wow I’m sorry”, “I’ll pray for healing”, “that’s intense” or something to that extent.  While I realize you are sorry, realize how I feel; while I realize you will be praying for healing…pray instead for me to get up tomorrow morning. And the responses go on and on.

But why do I say we cannot do it alone…becuase we cannot. We need other people, we have to search until we find others just like us who are hurting. We can cry together, email our woes and pain, hug each other from afar, pray for each other, text each other, tweet each other or Facebook each other. We must hang on to the person next to us that truly understands our world.

When we start sharing with each other it brings together an even greater network of “quasi-RAers” (those who have a loved one with RA) or whatever your invisible disease may be in your life. I believe that network will grow and grow…hopefully leading one day to the world knowing who we are, what we suffer with, and how we have to live life every day.

Yes you can tell..this is a passion of mine! That or I’m so sleep deprived I keep repeating myself…for my own benefit of course 🙂

What is your Legacy?

What are you leaving behind? How will you be remembered? What will your mark in history be?

Tough questions to think about right?

Who do you want to impact before you leave this life? What do you want to be remembered most for doing?

For me…regardless of what I do in life with my doctorate degree, I want to be remembered as someone who had a voice. A voice for her diseases (RALF), a voice for those in need, a giving spirit (traveling around the world to CARE), a heart that want nothing more than to make people happy, a desire to make a difference in at least one person’s life, and a desire to share God’s love with all that I meet.

What about you?

Relationship-less Society?

An interesting thought came to mind earlier today – are we losing our relationships? How often do you have a great conversation with someone you know. Not great as in – how are you  today? what is new in your life? etc. What I mean by great is how often do you confide your struggles, the deepest things that are holding you in a pit of despair/anger/frustration/grief etc? How often do we think we can share our deepest needs with someone and they actually care?

I know I would love to spend time talking with people who truly honestly care about my life, my never-ending pain, my journey of medication, the struggles of life with RA/Lupus/Fibro. I want people to care about ME and what is going on in MY life! What about you?

What are you doing? Quick and Easy Answer

What are you doing for the people who you interact with on a daily basis? Do you listen to their needs or share your needs? The one thing I believe we should totally do more of is spend time getting to really know the people we interact with every day. Yes, maybe you do not want to share all your in-depth personal issues but it does help to have someone else who listens to you, cares for you, and is some one that you can be open with about your struggles.

I know that is what I want in my life! I want to not live on my little island but I also want to have people who LISTEN and CARE. Not people who give their…”oh I’m sorry”, “gosh that must be hard” “I’ll pray for healing” answers. While yes I do believe in the power of prayer..instead of just saying that so that we can move on from the conversation…pray that my husband and I can still have a great marriage despite my RA. Pray that we can have fun, enjoy doing things together, spend time doing what we  want to do and most of all…that we enjoy the time we have together. While it is hard…try to avoid using the “quick and easy” answer when people are trying share their life with you. I know I appreciate sincerity..I am sure they do as well!

I am back to the books here in a little bit. I can say so far this doctoral program is teaching me so much. But one thing I realized while in bible study tonight…it is about the grade and it is not about the grade. Yes getting A’s is awesome, great and fantastic but you need to be LEARNING. Whether you are learning by making B’s or learning making A’s. You need to learn and put into practice what you are learning.

This doctoral program is the one and only (probably) marathon I will ever run! Endurance is far more important to finishing that making it in a certain time. I need to be able to use what I have learned versus just saying “hey I made a 4.0 but I cannot tell you anything about it.” So far I have been blessed with many “eye-opening” experiences and MUCH lack of sleep :-D.

RA, you are definitely not making this journey easy BUT I am no quitter! At least not yet!

What are you doing?

What are you doing for the people who you interact with every day? Do you listen to them? Do you ask them about their life with all sincerity? Do you show empathy? Do you show that you care?

I know I want people to care about me, to want to know what is going on in my life and to live a life that is an example of how I want to be treated. I want people to trust me, seek me out and know that I am the true example of a friend. While it is hard to “give” to other people…maybe something that we can all do is work harder at being there for the people who are in our lives.

I cannot help but wonder how our lives have become so “relationship-less.” How is that? Well we are now depending on “Facebook”/”twitter” or some other form of social media to “communicate” what is going on. Gone are the days of dropping in to see someone, to ask how they are doing or finding out how you can support them. The days of family dinner’s/ weekly lunch dates/ etc. Now we depend on seeing a “status update” to know how are friends are doing, who is in a relationship, who is getting engaged, who is sick, who has passed away etc. The list never ends..but the one thing that has ended is us calling with the news.

I miss the one on one communication and I hope that I can always be there for those in my life. I want them to know I am always available to listen, to pray, to visit and to care for them and their needs. What about you? How do you want to be remembered?

Yes a short soap box tonight! Let us just say, some days you do not realize how valuable it is to have someone say “I care.” This is especially true when you are hurting so bad and you just want some relief. If you are suffering tonight, as I know many are…just remember “I care.” And one reason I write on this blog so many times is to let you know that I do care, that I know how hard it is and I want you to be part of the life I LIVE. Yes LIVE, we can LIVE despite our pain!

One of those INSANE Days!

Today was one of those non-stop days! I woke up and headed staight to the shower. After getting ready I drove 30 minutes to meet a cohort member. Then we drove up to the main campus and spend about 4.5hrs there. We listened to our first dissertation proposal defense and experienced what it will be like for us when we get to that stage. It was great to meet members of additional cohort’s who are at a different level than us. You learn to ask as many questions as possible. One of our senior professors walked us through the department and showed us some of the labs and other equipment we have available to us. Overall, it was a fantastic experience!

Every day it seems I sepnd sooooooooooooooooooo much time on homework but I am amazed at all that I learn! I have realized that this degree is so prestigous because you have to do so much work. It is certainly a marathon. It does not matter your skills as much as your determination! You have to keep fighting for what you want that is for sure.

The pain has been incredible! Not being on medication has been so hard. I have learned to rest as much as possible. I have learned to let things go I cannot change because honestly I do not need the stress. Most importantly I have learned to let people’s comments to slide off my back.

The long and the short of it is that people probably will NEVER understand. It does not mean that the cannot understand it is that they do not have a push to understand. Well why? because they do not suffer like you and me. Is that frustration??? YES VERY! But is that something I need to stress about…???? NO it is not!

I am instead going to use my energy to focus on my education, to focus on my marriage and my service to my community.

One last thing I am going to mention is that I made my first contanct with my first hospice patient this week! I am so touched to be a part of this families life! It is hard to see them struggling with an impending loss…but amazing to be the helping hand at this difficult time .Do something for someone else this weekend!

Keep those of who are suffering in your prayers! I know I certainly need it…this week has been tough and it seems to just get tougher the longer I am off medicine.

Life recently

Life is busy, trying, exhausting and the list goes on! But one thing I can say…I am proud to be doing something so amazing as getting a doctorate! I know it was my dream and to be honest when RALF came into the picture I was not sure I could get it done! I am happy to say “I am still fighting”! And I will e fighting until I cannot fight anymore!