Chronic illness aka Q&A edition 2.

Okay, well I told Amy B. she could ask some questions because she didn't know I was back in blog land. She is the only exception because I have a huge soft spot in my heart for her son Philip. So here are her two answers.
Amy asks:
As a young adult the same age as my Philip... How do you make it through the harder days when you just wanna feel like WHY ME? Or What if?

Honestly, this might sound cliche- however my hard days are gone through with either reflecting on worse days or worship music. I love worship music with all of my heart and soul. When those don't work I have a select few people that I can go to and cry or talk to. There are actually two girls I know of off the top of my head and one guy that I have called and they have listened to me cry for far too long. I feel really bad about that sometimes, however that's how I get through those moments. I love them forever, I wish I could tell them about how much I love them. The What if days... Those are far and few between for me, but it seems like when they hit the idea doesn't leave fast. It scares me sometimes especially when I know there is something off. Even something slight, I am on my toes and scared. I wish people knew what it was like to have a stabbing pain and within two days have surgery. I think after getting my gal-bladder out last year I realized that things could get serious fast and that scares me sometimes. Although being with Jesus is going to be awesome I can only imagine.

"Philip rarely has those days but when he does they are so hard for me as his mom...I would love to know better how to help him."

I feel like the best way to help, is to listen. Support him even if it is screaming right along with him, there is no promise for tomorrow for anyone, that's the truth. However the days we are here should be spent loving each other. Show him love and let it be known he is loved.

Do you have any idea how special of a young lady I think you are? I just am so glad you are back. I have worried about you when you left a while back.

Honestly- with two people saying this now. I really don't know if I do know how special people see me. I don't think I will ever know because I have learned when God is in the picture, somehow the unthinkable always happens.

This Question and Answer time has gotten me to notice how people feel and what they wonder when they look at me. If you have other questions even if they are trivial. Leave them around, I might do another answer time with them if there are enough. I really wonder sometimes what people think when they're looking at a teen that's really sick. However I look at them now and I feel like it seems more normal to me. There are a lot of very sick, very hurting teens and I mean physically hurting not mentally but mentally hurting too. Okay so both. I feel like it's something that is actually pretended to be little but I know quite a few.

I feel that the dealing with a Chronic illness isn't talked about a lot. I also feel like when you're a teen it's an awkward time to be sick. Right now I feel like I am trying to figure out who I am as a person like every other teenager that is going through this period in their life. They experiment with things they go crazy they sneak out they, well- they do a lot of things. I see my peers do things a lot and I think wow that's awesome or I am glad I am not doing that. However at the same time I am taking on the responsibility of calling doctors and making decisions. Decisions that could quite possibly affect me in major ways the rest of my life. No, I don't mean college. So for those things it's stressful. I also think that sometimes those things are ignored among my friends and sometimes adults that I associate with. I think I overreact to little things because I feel like one day I am going to wake up and that person might be gone. Yes that is a real fear I have.

This article made me feel a little more normal about some things. Although I don't agree with some of the topics on the list and could bring it down to like 30 some of them really hit the nail on the head.

The two below hit me personally because in the last few weeks I feel like both have happened and I feel really bad about it now. I am praying about a certain situation because I feel at peace about it now, but it felt like a huge deal a few days ago.

Always ask before touching or hugging and never give them a power handshake or a friendly biff on the shoulder. Many people with chronic illnesses are in a lot of pain, particularly if they have symptoms like that of Fibromyalgia, where every touch signal can be magnified into significant pain. This changes all the time, so don’t stop hugging them, just check first and be gentle.

Recognise that pain and extreme tiredness can make anyone irritable (have you never snapped at someone when you’re sick with flu?) and that various medications can affect behaviour. If your friend does or says something rude or hurtful, give them the benefit of the doubt. They may well be horrified afterwards.

This is The End of my Question and Answer and Answer time! Hope you enjoyed.

Home!

Hi

The last two weeks of my life have been:

exciting, weakening, loyal, prayerful, weak, slow, loud, quiet, peaceful, eye-opening, sad, depressing, happy, God-giving, musical, interesting, full of wisdom, silent, conflicting, uncertain, oxygenated, full of laughter, found friendships, loss of hope, strength giving, unique, lovely, frustrating, white, painful, close, long, challenging, full of praise, tearful, compassionate, trusting, loss of..., and ever changing.

Today I got home and to come home with my port accessed my medical lingo refreshed and my leg sensations low it is a struggle for me. I sit and I have turned the music on for my blog and I encourage you to sit and listen to the song of choice it's Blessed Be the Name. As I thought of the blog I would be posting my first blog I post when I am home I have thought of so many things... There have been so many thoughts that crossed my mind to post but today I think the words will come as they come. I can't lie to you and say that this week was full of joy and my eyes were opened and I accepted God's will 100% the whole way. I can't say that the pain I experienced was something I understood. To say something like that would be lying but I would like to give you my feelings my raw understanding and the glimpse into the last week. It's not going to be formal and it might be confusing but my strength is barely here and I would really like to be real.
I went to the hospital per my doctors request after having chest pains that Monday night and not being able to have a sound sleep. From there I experienced seizures and pain that was unbelievable. I have struggled to understand my placement in this world and it has been horrible the pain that I was struggling through was shooting through my body and joy has been sucked out of me. To say this all was easy is to lie and I want to be honest while writing this because someday I will look back at this and my only thoughts are when I look back at this I want to see the truth I want to see what I came through. So bare with me.

I went from Telemetry to ICU to Pediatrics within a few days and then I was on Pediatrics for the whole stay in that time I became confused I don't remember visitors and I was lost. Every time I listened to the ipod Blessed be the name came on and I listened to it and cried. I don't know what else to think other than the fact that oh God, how did I get myself here. How did I get to this place in life and how will I get out. Friends and Family surrounded me in the time I needed them most and I had a lot of people pray for me near and far. Today I wonder if I continue to hold onto too much. In the past two weeks I have had many pills that are hard to swallow including the fact that I won't be graduating with an advanced regents diploma. Things that have just been hard things that used to seem simple seem hard and I had reached a point that I was taking things for granted a little bit. Today as I write this post hot tears pouring down my face because I want to be at church I want to hear the pastor speak, I had saved quarters for offering for the past year in a ball canning jar and this was the week to hand them in and I couldn't physically go to hand them in. My heart breaks at these little things, they don't seem like a lot to others but to me they are really the world.

School is not in my spectrum right now just because I have been so sick and I can't make it I have to get an IV infusion everyday and until things balance out a little more it won't be possible to go. I am heart broken I am weak I am sad I could go through 100 other emotions but I won't. People have no idea how big of an impact they have on me. How large visits to the hospital, or a text mean to me and what I think when it doesn't happen. A good friend of mine told me he would get back to me upon getting out of work and the roads turned bad that night so I waited, and waited hoping to hear he was okay. Still now hours later heard nothing. I find myself attached to some people that I find dear and I find them to be really important to me, from their opinions to their actions. A lot has been going on in my life and my world has been rocked. I have a commode in my room and am using a wheelchair an IV pole too. I know this seems very common for some lymie's but to me it is painful. I can't take not going to church because of this disease and missing out on the fun. I miss the people who have been going there for well, forever. It has been hard to get this far and now I must continue to move on. This is a rather sad farewell. I have decided that although this blog may continue to stand it will stand empty from new posts and empty from anything else. Reaching almost 200 posts in less than two years. Blogging has always been for me and I always wondered if people would write and then I did have people write many of them....

But now, now I must go I don't know why but today my heart is so broken and sad and I am so sick now even in my own bed that it seems like I can't really continue to keep posting. Letting all you strangers into my life. You all have been a part of me a part of my growth and a part of my development. If you're new here, go to my old posts I have some good ones there somewhere you just might have to look around. If you're an old visitor find comfort with the posts you have read before. I will continue to post around at other blogs with comments or other things but for now this is a chapter that is closing.