Wednesday, June 13, 2012

Originally posted Monday, May 7, 2012:

If the phone won't stop ringing...
The e-mail won't stop coming...
The texts won't quit dinging...
and FB won't stop updating...
When life gives you more than you can handle...
or when you feel completely overwhelmed...
Just remember this...
(at least for a little while!)

Escaping to lala land...
Originally posted Monday, May 7, 2012: 

Hold those you love close to you. Let them know you appreciate them. Keep in touch. Thinking about calling them, but don't feel like it? Do it anyway. Even a short conversation is important. Haven't gotten together for a while because your schedule is too full? Make some time. Life gets busy with "stuff," but relationships are too important to let "stuff" get in the way. When you are with them, hug them, hold them, laugh with them, cry with them. Resolve any differences you have with anyone. You never know how long you will have them here to be able to hold them or hang out with again. I have learned this all too well in the last few years. I have a few phone calls to return today.

Understanding God's ways?

Originally Posted, Wed, May 16:

I don't understand God's ways, but maybe that's why I'm not cut out to be God. I just have to trust Him, which is not easy to do. Trusting God is hard, but sometimes I think being God would be even harder. Of course, I'm only human, not omniscient, omnipresent, or omnipotent, but every single day we yell at Him, question Him, tell Him we could do better, ask Him for this and that, blame Him, or completely ignore Him. Yes, we love Him, praise Him, talk to Him, sing to Him, and thank Him too, but if I had all that thrown at me in one day I think I'd turn out the lights on the world and go to sleep. At least I escape through sleep when I can. In the end, even if I dont understand, I don't think there's anyone else who would be any better at the job. How many times would it take someone losing their trust in me for periods of time before I gave up completely on regaining their trust? Yet, he is always there for us to place our trust back in when we have lost it for a while. No. I am definitely not God and I'm not applying for the position. You can stop celebrating now! :)
Originally posted May 19, 2012:

I have to do a little bragging...not for myself, but for my TEAM!!!! TEAM= Together Everyone Achieves More! 

Nothing excites me more than other people who are so passionate about fighting DTP that they get so actively involved in G-PACT, are excited about our work, love other patients, and share the passion and vision that the original founders had in 2001. The vision has never changed, no matter how many times the volunteers and board members have. Why? Because patients need the same thing now that they needed back then- coping mechanisms, supportive resources, education, and hope to get through this now until a cure is found.

While we work with researchers, other organizations, and physicians too, patients need something to get through NOW because a cure will take time. Our goal from day one was to increase awareness, fight for a cure and support research without leaving patients with nothing to help in the meantime. The only significant thing that has changed about G-PACT in almost 11 years (August 23, 2001- date of founding) is the addition of new conditions. We make changes to meet the growing demands as they come, keep up with technology and utilize new resources available for the changing population, but the HEART behind G-PACT remains the same and always will as far as I'm concerned. The needs of patients have never changed and never will, so why change the ultimate mission behind G-PACT? The ultimate need is a cure, but until then we'll do everything we can to help everyone cope and have hope!

Thanks to EVERYONE who is supportive of G-PACT in any way, and especially all those on Team G-PACT who help keep things glowing on a day to day basis and provide a glimmer of hope to so many! I love Team G-PACT! G-PACT couldn't function without the team. Patients would be left behind to deal alone and DTP is already a very lonely and socially isolating condition. What Team G-PACT does is important! And no, I am NOT Team G-PACT. I am just ONE member of the team. I'm just the loudest one, I think...I tend to carry the bullhorn! :) But others do so much too! There are no small parts, only small players. We all come in different sizes, but everyone has an important position on the team!
Original Post: Monday, May 22, 2012:

Full day of non-stop work = a night of Carissa down time without guilt or feeling like another day has been wasted. That's one of the hardest things about chronic illness. No matter how hard you try sometimes to be productive and give your life a purpose, you often feel like days, weeks, months and years are slipping by without any meaning. Sunny days come and you can't go for a walk. Rainy days come and you can't play in the mud. You start to feel like your life is wasting away in bed while you sleep or are too sick to move. Every waking moment you are looking for a way to bring meaning and purpose into your life so you have a reason to keep fighting through the tough days. This doesn't allow for much personal time to just enjoy hobbies or chill out because you feel like any ounce of energy you have should be used productively and wisely to make up for the sick time. This isn't a healthy way to think though because "sick time" isn't "me" time. It's important to allow yourself to just play and enjoy life and not necessarily have anything exceptionally productive come of it. You need to learn to do things that relax the mind, body, soul, and are completely pointless and fun. I say all of this, but it's something I am struggling with learning how to do. Yet I realize the importance of being selfish once in a while for my own sanity and to avoid burnout. So, Carissa time it is. Hasta la vista.
Original post, Tuesday May 22, 2012-

Many know that it's been a dream of mine to write a book sharing my experiences, my insights into life, amazing stories of friends who have inspired me, share my odd humor, and put together a collection of my thoughts and things I have written about on FB, blogged, and papers I have written in the past. I have so much information and have written so much over the last 18 years that I want in permanent print to share with others. I LOVE to tell stories, as you well know. Status updates don't cut it for me when life is happening all around me and I always have things on my mind. So many people have encouraged me to write a book over the years too. I've never done it because I have been too sick, busy, and honestly, a book project sounds like an overwhelming undertaking for me right now. An author almost finished a book with the story of my life up until 2006, but she stopped because I got too sick to help contribute any more to the project. She still has all the materials and says I can have them to finish if I would like. She had an editor interested in publishing it at the time.

A wonderful lady whom I have known my entire life and who was my piano teacher growing up has really been one of my strongest supporters in pursuing this dream. I have seen it as virtually impossible given my time constraints and energy levels. However, the other day she connected me with a lady who works with people to help them collect their stories and thoughts and put them in printed format. She does an hour long free consultation to determine if she thinks she can be helpful in making these types of dreams become reality. Honestly, all I need is a little guidance. I have plenty of information. I just need to organize it and sort through it all to determine what to include and to edit it for a book. Since so much is coping writing, some things are unedited and there will be necessary editing, although I don't want any editing to change the impact my feelings have on what I have written.

The lady who does these consultations wrote me right back yesterday with an interest in helping me do this. She had received my e-mail and a message from my friend, as well, who recommended me for the project.

I am excited to say that I have a one hour consultation planned for this Thursday. I sent her a little background info of news articles, my blog, and the Messiah College video so she can have some solid background before the official consult. She seems excited about helping me so hopefully she can. If she is interested in my story, I will start to work on that as a personal project and maybe I will become a published author in the near future.

I didn't think this would EVER happen, or at least not for a long time, so this is exciting for me. I just hope it works out. It will definitely help me learn better time management skills as I will need to devote a certain amount of time each day or week to focusing on this project! A good deal of the proceeds from book sales will go to G-PACT, of course, and obviously a commission to her too. I need to spend some time digging up a lot of stuff from years back to look over. That part will take a while, but I'm just glad that this could truly become a reality much sooner than I ever thought!
Original post: Wednesday, May 23, 2012; 

"When the days are long and the nights don't end,
and my fears are strong and my scars won't mend
when I'm full of pain and my tears just fall
and I feel like life has hit a wall
I remember this because it's true
These times won't last, each day is new
I know that I must cling to hope 
And never let go of the rope
I tell myself I will get through
I know because I always do!"

-Carissaism, 2012
Original Post- Sat. May 26, 2012:

I love Lego's, naps, LCBC, naps, Jeeps, naps, the Steelers, naps, Troy Polamalu, naps, good friends and family, naps, G-PACT, naps, organ donors, naps, laughing until I hurt, naps, food I can't eat, naps, lime green, naps, funky socks, naps, 72 degree weather, naps, cheese, naps, taking funky self portraits, naps, Facebook, naps. iPhones, naps, video games, naps, good days, naps, getting things accomplished, naps, reading, naps, illustrating, naps, sunny days, naps, hats, naps, classic TV, naps, seeing hair in my armpits (hey, trust me, when chronically malnourished, that's a good thing...), naps, energetic days, naps, Pawn Stars, naps, lots of spoons, naps, online shopping and not going to stores, naps, traveling to conferences, naps. I realize some of these are oxymorons, but it doesn't mean I don't like them anyway!
I'm going to be spending a good deal of time posting things on here that may seem out of date. I post A LOT on Facebook, and I am working on getting all of my FB posts together on this blog where they will always be accessible in one location. So, please bear with me as I work on this and I will try to date everything so you know where they are coming from. Most are always relavent and timing doesn't matter, but some may seem out of order and I will try to make that clear. I would just like for my posts to be in one location and will always try to post here and on FB from now on to keep this blog more current, and to keep people who don't follow FB much informed on my innermost thoughts. I will not be posting my day to days here...only the most beneficial thoughts I always want to keep. 

Being ill is a full-time job

Last Friday was one of those days I needed an on-call aide. I had two errands I had to run. I woke up with a migraine, muscles not moving well, my head was really foggy, and I was too tired to be safe driving! One errand could potentially have waited, but as long as one couldn't I felt like I might as well do the other too. I had to go to HMC to manually pick up my Fentanyl prescription because I was running out Friday and couldn't go all weekend without pain meds. I had to be back by four to start my TPN and I had to get my other fluids going before I left.

Being chronically ill is a lot more work than people think. People think we enjoy laying around sleeping or doing other stuff all day, getting paid to not work (I work my butt off, just don't paid), but don't realize that everything we do takes so much energy and it's A LOT of work to be sick. It's hard to even make it to the bathroom sometimes and getting dressed often takes several phases with a lot of rest in between the shirt and the pants. It takes so much work to do the simplest things. There's meds to keep up with, IV fluids to hook up to, TPN to run every single night, doctors appointments, dealing with the whole medical system, insurance issues, phone calls all the time to docs, pharmacies, home health, paperwork to sign and mail back in. Most of the time we are even too tired to pick up the phone and make these calls. Some days I can barely talk. We don't just lay around doing nothing. It's A LOT of work to try to be as healthy as possible and everything takes at least twice as much energy...usually even more. Getting a shower is an overwhelming thought most days and all I want to do when done is take a nap! We work hard and on top of that, we have to fight a lot of tough emotions, fears, frustrations, and challenges that come with this.

We are not lazy. We work really hard, it's just in a different way than most people. But we work JUST as hard, or even harder. We don't get a vacation either. It's a 24/7/365 job. We can't call in sick either. I have to hook up to my fluids and TPN every single day no matter how I feel or how much energy it takes. I have to take my meds all day long regardless of how nauseous I may be or if I am in the middle of a nap. There is no break, there is no choice.