Tonight we are in the same pattern as the past three days. Maxed out on meds..and he so needs more...Finding a balance is NOT going to happen. We will be getting some testing and procedure on Monday. Part of me wonders if the new machine could be broken ..chances are no....more then likely it is just not working for him. We will know more Monday. The Dr who is covering for his DR would be more then glad to see us and try to help..but as we have heard way too many times..Philip is complex and they are not sure what to do or try etc. His Dr will be back Monday and I just feel in my heart He is the best one to even start to change anything...Guessing games are never good..and when it is my son..It is not a option I am willing to take..So we are taking it day by day..Hour By Hour..
I am healing...still sore..but that is to be expected. I had a wonderful conversation with my sweet friend Sheli last night. Her DH who is a pastor blessed me with a wonderful time of prayer...He said just what I needed to hear. In fact I told Sheli I thought I had a pastor crush on him...she just threaten me and said some things that I did not know a pastor wife could or should say...Nah..I am joking..
Sheli listened to me tell her how concerned I was that I was so tired and worn down ..and even got out of breathe so easy. She listened and then reminded me that I am sick and have been having surgery after surgery. It is odd...while I know all of that...and I live it daily..it is easy to forget it and get down on myself for feeling "OFF". I Hate to feel like I am giving into being sick. But you know what...as much as I hate to admit it..some days lately it has won. This thing called Cancer and Treatment has been taking a toll on me . But not for long...
I wanted to share that my anxiety has gotten some better. I have been really trying to focus on the wonderful blessings in my life and not all the things that can and might happen. It does not always work perfect..but I am working on it daily. I do NOT want to give in to worrying about what if's...cause there are some real bad ones out there...
I have really tried hard to spend some time focusing on the kids. The truth is..Philip's medical issues require a lot of time and physical and emotional energy. Reed is growing up by the minute and before long he will not even want to share silly jokes or gross stories with me...Emily is turning into a young lady by the minute ...she is anxious about gong to Jr high..and I am anxious and excited for her. And well you all know I LOVE every second I have with my sweet 4 year old. The kids require care and time from me..and they give me back something more special....then money can buy...LOVE .
Sometimes it seems that I feel like I am being short or nasty or judged...if I do not call or post or share this or that. The truth is..I am who I am..and I am doing things MY way. In the end of the day..I have to lay down and know I have done the best I can in a day..and some days that means I can not and am not going to talk, share, dwell, or harp on my personal life..or details. Some days I can not and will not answer emails...and I also may not answer my phone. Sometimes when "you" get upset that I have not answered the phone or answered that email...I have my head stuck in a toilet...or I am laying in bed trying to figure out if I can make it one more day without washing my hair. The fact is..while you want to hear the details..the answers to your questions..and or what is going on...It is not just simple fill in the blanks..it is my life we are talking about. Conversations about my Son and his medical issues are painful for me..if I want to talk about it..I will..when I can. If you ask and I say I will share later..I will. I do not and am not going to share details about my DH UNTIL I want to...It is not a reality show..it is my life. It is me who has been lonely and hurting and sad. Is it that hard to understand that I do NOT want to give out details? My medical..it is hard enough for me to even think about what may happen..I will tell you the "ugly" facts when I am ready..if I am ever ready.
This is not to you or you or even you..it is a general FYI...I can not even begin to tell you all how much your support means to me. But I am finding MY way. Somehow I did not really GET it that I am sick ...until it has gone on and on..until I have had operation after operation. Until I figured out I need meds to do the simplest of things...I think a light bulb has gone off..this is real..and I am finding my own way of dealing with it. So be patient and let me find my way..
Speaking of meds..I am tired and my pain meds are kicking in...
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9 comments:
God Bless you Amy...I will continue to keep you in my prayers..
Good morning Amy ..... I do hope you were able to get some much needed rest last night.
All of your comments hit me to the core ..... not only are you dealing with being a "patient" but you also have the difficult task of being a "caregiver".
It amazes me that you even have the strength to turn on the computer after a day like you describe.
When I was a caregiver to my husband I remember people telling me to "take care of myself or I'd be no good for Jeff". That seemed near impossible. How you are doing is while experiencing what you are going through is just beyond my comprehension.
I so wish I lived closer to you ....
Cheryl
ahhh my sweet friend...your post touched my heart. I am praying for you.
Thinking about you, praying for you, and all you love.....
That was an "odds and ends" not a vent! This blog is for us to keep up with you, and for you to share WHAT you want, WHEN you want. You are absolutely right to live your life, and come here when you feel the need, or the want. It is for you. Granted, everyone, including me, just wants to know what is going on because we care about YOU, and feel so connected to you. But we absolutely need to be support providers, and not ever add a burden to you. I want to help lift your burdens, not create additional ones for you to take on.
Love you lots!
I SO admire you Amy!!! You are one tough cookie and I LIKE it :)
Hang in there friend!
Amy, you don't owe anyone any explanations, details, feelings - period! I, for one, just am thankful for the days that we have some 'tweetage' conversations. Those special times let me know that you are hangin' in there and even able to see the light side of things in the midst of all that has been thrown at you. I'm glad your getting better and I'll be praying for some good news on Monday from Philip's doctor as to their next steps.
you shouldn't feel bad about this post. You should only share what you feel up to sharing. Period. There are no ifs, ands or buts. This is your life and if you can only deal with so much then so be it. That's that. I share only what I can and no more, and no less about my own life. There is MUCH I keep private. That's how life is. I can pray for you without knowing every little detail. And I will. Thinking of you!
I was tired and going to bed but felt a pull... to come to your blog before I shut my eyes. Am so glad I did. Now I know to focus my prayers more for Monday. Thank you God.
Eske said something that hit home.. 'support providers'.. Thank you eske for reminding me of this.
Bless your heart, Amy. You deal with so much..everything just coming at you at once.This is your place and you share what you want, when you want, and only if you want.Will be here with support and encouragement. You have touched my heart and life and so many others.Love ya,girl
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