Tomorrow at 3:00p.m. I’m hoping my body will cooperate! Our church does this one event for the beginning of Holy Week! (http://www.youtube.com/watch?v=8KX2-J6uS-o) is the link to last year’s event. This year it will be children who will be participating! Needless to say, I’m excited to see the video of this year’s performance 🙂
It is hard to imagine that yet another “Holy Week” is upon us! Wow times flies when you get older! As a child I remember thinking…the year takes so long to get to my birthday! Now I wish I only had one birthday a year…well I know I do but it seems like each birthday just keeps happening faster and faster!
One major thing that I won’t ever forget about Holy Week this year! I received my COBRA information in the mail! YAY! And the funny part is the amount I will be paying for COBRA is about the same I will be paying for the Texas Select Pool insurance! So at least I get to keep my same insurance carrier! YAY! So once my insurance is re-instated (hopefully I do not have the 60 day wait) I will be making my first appointments.
I am sadly going to have to go with a new PCP and rheumy. The one that I used to see only sees patients Monday through Wednesday and at the latest 4:00p.m. I cannot make that now with my new schedule and I really should not be driving all the way out there! So I checked this afternoon and there is ONE (ONE!!) rheumy that is about 20 minutes away. I am going to hopefully find a new PCP and then a new good rheumy! I’m nervous…of course…because I do not want to fight about the meds or the tx. Pray that my new doctor group will be easy to work with and that I will have peace when it comes to their treatment. I am personally one that will leave a PCP if I do not feel comfortable after the first visit, if I am treated like a copay versus a patient…don’t expect to see me back.
So I am MAJORLY MAJORLY MAJORLY thankful that I have COBRA! BLESSED SO BLESSED! And excited to see the new future with meds again! Been way tooo long!! So tonight I am over-joyed despite the intense pain!! 🙂
For us spoonies or squeakers some days are so hard! So hard because our bodies are not just our friends! Today was a day for me…I am seriously struggled to get through today because I hurt so bad. And of course when you hurt so bad, it tends to drain your emotions! You feel lonely because NO ONE (but fellow squeakers/spoonies) understand!
You sometimes want to scream because for one moment, one short moment, you just do not want to hurt! You want to know what it feels like again to get out of bed and not hurt. To shower and not struggle to open bottles of shampoo! You want to know what it is like to wake up, go to work, go to dinner, shop and hang out with your friends WITHOUT the feelings of CONSTANT exhaustion!
You want to look in the mirror and not see the weight gain (thank you steroids), the acne (again thank you steroids) and the hair problems (loss/dry—thank you autoimmune suppressants). You want to feel NORMAL! You want to feel happy, care-free, PAIN FREE!
I know for me, my normal has become pain! Intense daily pain…many days it brings tears to my eyes…..because I am too young…we are all too young to live our lives like this! But you want to know the one thing that perked me up today….Today what perked me up was when I got to hold the hand of someone who is walking in the very last weeks (maybe even days) of her life here on this earth.
So despite my frustration, my anger, or my complete exhaustion…I am glad I pulled myself out of bed today to go visit her! Strange how when you go to give to someone else..you end up being blessed in the process!
Today, I had an awesome conversation! It made me realize how long sometimes do we go with out a real conversation?? We are a society so full of text messages, phone calls, Skype, Facetime etc. We have lost the “art” of someone talking to you one on one! I don’t know why but it really made my day to have a good conversation with someone today! I hope I can have another conversation tomorrow, the next day and the next day!
Music! Do you ever use music as therapy??? I do … the nights I am suffering so bad I can barely thing I go to my music! Here are some songs that I like! 🙂
YES I do love Rascal Flatts 🙂
http://www.youtube.com/watch?v=dnvg0OtupuI (amazing video of Carrie Underwood singing “How Great Thou Art)
I’m thankful! Why? Thanks to the “crappy” meds my stomach/digestive system has been messed up and that makes it hard to know what to eat. It also makes it hard to find food that doesn’t make you sick later. This problem makes it extremely difficult to buy food because it will look good in the store and then you go and eat it and it doesn’t settle well with you. Then you end up paying for eating it later. My tastes have so changed since my first dose of autoimmune suppressants.
But I am thankful for my husband who at 10:00p.m. will go out and find something that will settle in my stomach. That is giving! And loving! And for that I am so grateful! My pain tonight has been so intense..everything is hurting/everything feels broken. The exhaustion is intense…and to be honest I have not gotten much done.
This makes me incredibly thankful that I had worked hard over Spring Break…if I do not get much done tonight or tomorrow…I will still be ahead! SOO THANKFUL!
So yes tonight I am thankful! I am thankful for those who encourage me, thankful for my hubby who gets me food and thankful for all that I have in my life.
Today was an awesome as well as frustrating day!!!! Awesome day because I found out I made a 97/100 on my first doctoral paper!!! God is good! I was sooo nervous and am now so thankful! It is better than I thought I would get! I was aiming for a 90!!! It took a lot of work though, I know what it takes to make these grades, I know I cannot slack off!
The frustrating part of today is my insurance application ran into a glitch! Very disappointing but I still have hope! When I was down a few moments ago I came to a really awesome revelation….empathy!
Empathy is not sympathy! Empathy is what people have toward someone else, when you sense you are not pitied. Instead you feel understood, like they are trying or are seeing the world though your eyes and your shoes!
Feeling empathy (at least for me) is something that I value! When someone can look at you and show you – through their eyes, their body language and their concern – that they care. That they want to be there with you in this journey! That is a truly awesome feeling!
You realize you don’t have to fight! You don’t have to get exasperated with re-explaining the same thing over and over again! You don’t have to explain that you feel awful but maybe look great! You don’t have to paste a smile on your face and ignore the “you must be feeling better” welcomes!
Instead when you wince in pain and the persons eyes grow soft with concern! When you say that your whole body aches and you are exhausted; the response is that you are lightly touched with encouragement to keep going!
The people who are there empathetic really make an impact! I hope that I am considered one of them!
“Being a doctoral student is like becoming all of the Seven Dwarves. In the beginning you’re Dopey and Bashful. In the middle, you are usually sick (Sneezy), tired (Sleepy), and irritable (Grumpy). But at the end, they call you Doc, and then you’re Happy.”
WOW it is amazing how true this feels! Thank you internet, I needed to laugh today!
Watching the Passion 2012 video, made me think of yet another video that touched my life. I remember the day that new channels began their coverage of Haiti. To date there is still devastation, many are still living in temporary housing..their life forever changed. As I look at some of the pictures in this music video I cannot help but wonder…what else can we still do?
Can you tell where my heart is.. international humanitarian service! If I could do it all the time…I would totally do it!
I was looking for a multi-language video and this caught my eye! Very interesting way to sing a song by incorporating someone signing it in a few languages at the same time. Annoying so may think but to me it was really cool!
Tonight as I prepare to wind down and get myself ready for this upcoming week….I could not help but wonder…what words of encouragement would help me tonight? Since I suppose I am not alone in that boat here is what came to my mind:
– You can do this…you are not alone in this fight. I can tell from those who pass through website or post on my Facebook page. This journey is not just my journey….it is our our journey. While I am sad that there are people out there that hurt and feel more rotten than me….I am so happy (almost to tears) that you understand, that you know my pain. That I do not have to sit here and explain and re-explain. You know when I say something…yes I know..it does for me too!
-I know that I have some awesome supporters! I am blessed…there is no better encouragement than having an awesome husband who is willing to walk this journey too (some days better than others of course). A husband who will go through and open the toothpaste, the shampoo, your soda, your deodorant. A husband that will help carry you to bed when you cannot walk or get up on your own. A husband that will brush your hair when your hands and shoulders hurt so bad you cannot do it yourself. I also am blessed with amazing “friends.” I call you “friends” because you encourage me…your “likes”, you “comments”, your “texts” and your “emails.” All of those things encourage me..even if it is a one-liner!! Trust me I have some AMAZING friends in this journey who perk me up with a one liner back and forth! You understand.
-My pets…you do not realize how valuable pets are until you are home a lot. They entertain you with their perkyness and how they can play with the air. They also entertain you by how they sleep…sometimes I do not know how they get into those positions! But it is fun to watch and yes it makes me laugh! My adorable girls are so amazing! While they do not know it…they encourage me.
Lastly (and probably actually I should have put it first) is my faith! My believe that I can whisper a prayer when this journey just gets too much (daily/momentarily). And how a whoosh of peace comes over me. Strength seeps into my bones and I can write one more paragraph. I can stay up one more hour to finish a project. I can put the smile on my face and actually get somewhere…it is not my strength it is God’s strength. It reminds me of this song (http://www.youtube.com/watch?v=emgv-VRtMEU&feature=related)
Yet again it is Sunday night! I was able to rest some today which was incredibly nice, I am more thankful every day for having spent Spring Break working on homework! To not be stressed out because of homework is amazing! I am ahead and that is awesome! I did some drafts of projects due in a few weeks and then I was able to work on one of three power points. I have put in place some personal deadlines which hopefully will help me stay ahead!
While going through some pictures tonight, I was yet again caught on my Africa pictures! What an amazing country! I went and looked at the power point I made to share my journey through genocide memorials! No words can describe what it is like to stand next to mass grave sites or see what I saw in Rwanda. Definitely a growing experience.
Here are some videos that I included on my power point…very thought provoking!