Hi All,
well I fasted and went to the hospital today for the insertion of my port. I really had to pysch myself up for this surgery.
To be honest, I have not really wanted this surgery and have "Settled" for an abdo port because you cannot see it. Otherwise, I feel uncomfortable even talking about a port. This morning I felt pretty vulnerable about the whole thing and pushed myself to get to the hospital, sit there and be admitted and so on.
Well just before the anaesthetist is about to put in my jelco, the surgeon asked for Alan and I to come in the room for a chat. I had already seen him once. Turns out my neutrophils did a freak drop.....that is what I am calling it before I am never usually under 500...and usually 1000 or closer to it. My counts from yesterday came back and my neuts were only 200! I was shocked. So of course, surgery got cancelled because infection is too dangerous with a port. *sigh* I felt confused because I was relieved that I didn't have to have the port and then panicked about the low count....and some other counts bothered me too. SO I must admit that I have had some good tears today.
Now the port is delayed for at least 2 weeks! I don't want it anyway :-(
I just wish I didn 't have FA. Yep, can you tell...I feel real negative and upset today. Usually I can have such a good outlook but I am struggling today. I don't want low counts....I don't want to die from FA.....I don't want to experience a transplant with all the trauma that happens.....I don't want anything to do with cancer. I don't want anything to do with ANYTHING about FA. I feel agressive and upset. I don't want a port.........FA is SO debilitating. Sometimes the FEAR is unbelievable.
I wish I didn't have FA. I want so badly to be a normal person who can do normal things and not live with a fear inside all the time. I hate watching for counts as to whether they are normal or not. I don't like the options that us FA people have with medical science. They are not exactly great options. Oh yes, I appreciate the research that happens. However, it is still hurtful to our bodies and the process of "getting help" with FA problems is emotional and depressing.....and just because I have not had a transplant doesn't mean I don't experience life and death decisions.....or experience facing death.
I dislike pre-leukaemia and low counts and I dislike transplant and what it does it you. I am sad that my brother died a month after his transplant. I feel sad.
I am fed up that medical science cannot cure this thing. Only God can you know...........us humans will never understand the complexity of the human body no matter how hard we try. There may be a cure one day but we are not God....Jesus is God and He knows.... someone might think that discouraging and in a way it is, because medical science cannot help without hurting ......but I have to believe that God knows everything about my body and can fix it even when doctors have no idea. He is in control. Although today I don't feel it.
I write a lot on this blog but there are some huge things I don't share. I have a very close walk with Jesus and I am plodding along through this FA stuff, trying to achieve things that FA doctors tell me I cannot. My future with FA from a medical person's view is bleak but my future from God's point of view is full and bright and exciting.
I believe Jesus can heal. I believe He has asked me to keep pressing and I will because no medical science gives me hope like Jesus does. I believe Jesus heals a lot through medical science but boy, in my life time, I have seen miraculous healings too! Without a doubt. I really have guys....I have witnessed with my own eyes....big things......blood diseases and stuff....miraculous! It does happen!
My heart bleeds sometimes with everything going on. Today, I know God must be in control but I feel so angry at people. You don't wish someone to have FA but sometimes thoughts are so strong when you feel so closed in. I don't want it. I want a bright future and I want more children and I want to be free of FA problems.
Why should I settle for things that hurt me to fix FA stuff? Is that the best I can do for my future? No, I can have so much more. I believe I can! I REALLY feel this! Why should we settle for all of that FA stuff being the best we can do????? I want to go for greater things and with Jesus' help, I know it is possible.
I know, I know....many people will read this and just think it is venting! This is more than venting.....these are deep things in my heart...and I am only scrapping the surface. Some people may say, "get real",.......but you know what? I dislike it when people think that I am only talking Christian jargon.....because I am not...Jesus has more for me than this. I won't give up. It is real people. It is real. He has already revealed interesting things with FA and my life.
Hmm...I don't know if I even stayed on track with what I was first discussing?
FA is frustrating. Life can be frustrating but I will run on in the race....not just plod. Thanks for hanging in there through my entry :-)
Love Charisse
19 comments:
Charisse, if only you could count all the people you have blessed with your outlook on life, your courage, and your faith! I'm just a blog on the other side of the planet, but I can only imagine the number of people who draw courage, and build faith from watching and listening to you. I am certainly one of such people. Please hang in there, and rest in the comfort of HIS arms. I pray for peace for you tonight.
Charisse, I am so sorry that your surgery was cancelled, and that you are struggling so much today.
I am thinking of you, and send my love.
Please let me know if there is anything you need from me.
We are here for you.
love
Brooke
Charisse,
I understand how you must feel. I hope you know that many of us in the FAmily pray for your well being and that you enjoy all that this life offers you. Yes, FA is the pits but as my Mom always says, when life gives you lemons you must learn to make lemonade. I hope you find that something today to lift your spirits.
Hugs and prayers, the Fiaschetti FAmily
Charisse,
I can totally relate to what you're feeling in many ways. FA is difficult to deal with. There are times when it's more difficult than other times. All you can do right now is hold on to and cherish the many blessings you've been given. Concentrate on those.
I know it's easy to get bogged down in the reality of FA. The older we get the more things we have to deal with in regards to FA. It's not easy but we have been chosen to have FA because we are strong enough to deal with it when so many others would struggle even moreso.
Hang in there and know that you're not alone.
Hi Charisse,
I just returned your email before I read your blog - should have done it the other way. I think you are an amazing person and you are right to keep the faith. I understand your frustration and your wishing to not have FA. All of us in the FAmily have been there. Heaven knows I have.
I know you are feeling overwhelmed and innundated with the realities of FA right now and actually I have been amazed with how well you have held up.
Remember that you are an amazing, loved and cherished person and that God is in control. We just sometimes can't see it.
Jennifer
Charisse -- we hear your heartfelt yearnings to be normal. We all want that for you. We are all praying for that for you. God's will may be to heal your or not to heal you. He has a bigger purpose than any of us can see. So we must trust in that. May he bless you with peace and strength to trust Him in all things. --Kathy in Louisville,KY
Oh Charisse! I am sooo sorry about everything you have to deal with. I can't even imagine the feelings you have. You're always so sweet and positive and such a great example for so many people, but that doesn't make it any easier for you. I will definitely be praying for you.
Love,
Katie
Venting is human and okay. No such thing as "just" venting: it IS an expression of the very deep things you are feeling and of course you are feeling them.
Your longing is tangible and my heart is with you that you receive all you long for.
PS: I don't think it diminishes your faith any either, to vent, to voice your frustrations & pain & fear. As you say, God made you, he made your body, your mind, your soul, your emotional core: He understands the complexities of the latter, the complexities of emotion entwined with physical frustrations and pain.
I am not a born-again Christian, but my heart desire for you is that no-one ever tries to tell you that you are lacking in faith or "just" venting when you feel the way you do right now. It is more than understandable that you feel the way you do: God knows you, He understands.
xx
Dear Risy
How my heart aches for you girl! I can only encourage you and believe with you and perhaps lift up your hands when they are hanging a bit low!!
You are allowed to be "weak" at times, in that time He is your strength....I guess if it relied on our strength to live and believe there would be no need for Him!!
You are loved weak or strong, venting or encouraging, well or sick. You are surrounded by those who will lift your hands up when you are down, so rest in that...when we have done all we can do, we just stand .....
I love you and believe in miracles, which you are already...so many testimonies and realities that God is with you......remember you birthday milestone!!! Remember Isaac!!!
Things will be better in a couple of days.......you will turn around. I love you girl, always close to my heart Cathy
Dearest Charisse, one of the two choicest girls in my life,
You are only being real, honest and telling it like it is. If you don't know your enemy you can't fight it. So, knowing your enemy we fight it together
Actually, the greater the need, the greater the grace of God. Just when we get to the end of ourselves, God steps up the grace level.
He gives you the faith. He gives you the grace, just as He always has. He loves you soooo much. When we are weak, He is strong. He is in you and He is strong. Greater is He that is in you than he that is in the world. Keep expecting the 'greater.'
We love you sooooo much too.
Praying for you always. We are believing with you.
Love you Sweetheart,
Mum
Dearest Charisse, hang on to your faith my dear, for with Him, all things are possible. Yes, life can be so frustrating, and hard to deal with, but we must give it all to God and let him handle it, in His way, and in His time. You are such a strong and brave woman, and I know you have dealt with a lot of pain and loss in your life, I understand that pain to an extent. But I also know that you are one of the strongest women I know, both in your faith and in your soul. Take a deep breathe and know that there are many people praying for you and with you, and know that Jesus is always with you too! All my love,
Judy
The Lord knows all the "whys" in our lives. Trust Him! Praying!
Proverbs 3:5-6 Trust in the LORD with all thine heart; and lean not unto thine own understanding. In all thy ways acknowledge him, and he shall direct thy paths.
Prayer Bears
My email address
We are never given more than we can deal with in this life. Somewhere deep inside you dwells an amazing strength which will get you through this and every hurdle you face. Think of the sense of accomplishment you feel when you look at your life now. There were no doubt dark times when you thought that getting to this stage in life and being a mum was a dream far beyond your grasp. You have already done so much more than you could have dreamed. You are surrounded by people who love and support you on this journey. Stay strong and positive.
Blessings,
Jacqui
xo
Charisse,
Nicholas, too, gets frustrated with having FA and questions "Why" he has it! He gets so heartbroken at times and has to cry it out. I feel so helpless and can only pray for the peace of God that passeth all understanding to be his and yours on a daily basis. You can do ALL things through Christ who strengthens you! Without Him, we are nothing. Through His grace, we are everything HE wants us to be!
Praying you feel HIS arms wrapped around you and giving you all the love of your extended FAmily!
Blessings and Bear Hugs,
My heart truly breaks for you. Our oldest child was born with some deformities in her eyes, and although not nearly as intense or life altering as your battle with FA, I totally "get" your feelings of wanting a normal life. Those raw emotions will never go away, they pop up here and there. I wish I had some magical words of inspiration to make you feel better, but I guess I don't. Hang in there, you are in my thoughts and prayers. God bless.
We have such amazing eyewitness testimony of Jesus and just a fraction of what He did while He was visibly present here on earth. Look only to Him! Praying!
1 John 1:1-4 That which was from the beginning, which we have heard, which we have seen with our eyes, which we have looked upon, and our hands have handled, of the Word of life; (For the life was manifested, and we have seen it, and bear witness, and shew unto you that eternal life, which was with the Father, and was manifested unto us;) That which we have seen and heard declare we unto you, that ye also may have fellowship with us: and truly our fellowship is with the Father, and with his Son Jesus Christ. And these things write we unto you, that your joy may be full.
Prayer Bears
My email address
May the Lord wrap His loving arms around you! Know I'm praying so at this end!
Nahum 1:7 The LORD is good, a strong hold in the day of trouble; and he knoweth them that trust in him.
Prayer Bears
My email address
I know your frustration baby, and am with you all the way. Love you lots, Alan
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