Hello Everyone,
it has been a tough day today and I thought I would write in my journal to release some aggitation that I have. I woke up this morning feeling down. I felt like I needed to stay in bed. It has been good that the IVIG reaction has not been as full of pain as last time but it still has been at a level of high aggitation. I was struck with such sleepiness. On Monday I woke at 11am and went back to bed, fell asleep til 3.40pm...Tuesday was a bit better but I was still very tired and sleepy...then today I just felt so down about it...I have also had a constant headache since the last IVIG reaction and I have found that the pain killers they have given me are not helping...and today I had pin prick feeling in my eyes...I just finally felt real upset today and cried and cried. I hate it when I cry and Isaac sees me. I have been holding up well and today I just broke down. I cried about lots of things...this is when you can tell you are sick of what is going on. I was aggitated that someone would not just fix my IVIG reaction...I wanted to go to the hospital...as you know that feeling is not like me...I can't stand being in hospital...but I wanted help to get rid of the headache and to stop the feelings that I am having and I was anxious about having another IVIG because I can't stand how I am feeling afterwards.....I would be a terrible transplant patient...I would have no patience and would be anxious about everything..I am not joking but I honestly think I would have to be sedated all the time if I had a transplant! The fact that I get so emotionally worked up with health issues and depressed really worries me when it comes to long term, serious treatment...it is a great concern for my doctors and for myself! Anyway, got side tracked....we are not considering transplant as you guys know...but I don't want to discuss that.
I started crying about my hair....I had my hair cut around Christmas time last year and layered and blonde streaks put in. It made me feel fresh and good about myself. My hair becomes very heavy and I have trouble putting it up ...I am sure I get a headache from it. Well we have been tight financially and I asked the hair dresser how much it would be to re-do my hair...and when they told me I felt so upset. I have been habouring my little "upset" and "worried" feelings about that for about 3 or 4 weeks....and trying to save up my stash of money for that...today I broke down in tears about how I would not ever be able to have spending money if I have to pay for my hair...and I got all upset and anxious. I feel really yucky with my hair like it is right now....and I need a hair cut and I would like some colour put back in it again. I think it is important for me to feel good about myself. I sometimes have such self esteem issues with having FA that I get very down...and when you have treatments that make you feel yucky..if your hair is yucky...then you don't feel good. Alan said we can spare some money from general account to go towards my hair....I don't mind putting some of my money to it but was frustrated about the whole thing. I suppose that might all sound really stupid to you all!!! I don't know...but I know I was very emotionally charged today and it was a huge issue for me. So, I hardly ever pamper myself and will go and get my hair done and I know I will feel better about myself.
I said in one of my other journal postings that the little things matter...and they do...they really matter...sometimes they matter abover all those treatments that we have with FA...above all the serious bone marrow issues, high blast counts, pre-leukaemia...these things that occupy our minds...but the little things matter more I think...because these things are things that help us to enjoy our lives.....without them....we have no hope of enjoyment....can you imagine living every day thinking about how you will die???? It is horrible. I would rather have wisdom with my health and think about how I can spend time with my son and husband...how to have fun, make friends and do something with my life.
I think that having friends is SO important. I think not forgetting your friends is very important and making them feel like they are important. I think that relationships matter.....why am I saying all of this. People, please treasure your relationships with your friends...whether they are in the same country or not...treasure their feelings....treasure them....some of us have serious illnesses and really need your friendship....some of us won't live as long as others...we are such important individuals.....and we get caught up with things...but always remember how much of a blessing you can be to someone else....I might sound like a crazy person writing all this...I needed to vent tonight. I have felt so emotional....some things may not make any sense...but I still needed to say them....and even now as I have tears in my eyes...I know that my emotions are stirred up tonight. Treasure your family...love them....because you don't know whether you will see them the next day.....with stuff like FA...I never know what is gonna happen....I am gonna live it to the fullest! I didn't realise how upset I am feeling tonight...how emotional. I know this is a long entry but please bear with me as I get it all out. YOur support is important to me.
Alan and I have some other stuff that is going on as well....first of all...we will not be able to get to camp. Alan has told me it is now a slim possibility and the reality of that today hit me.....I felt lonely...I feel lonely from all my FA friends. I live so far away. It hit me and my heart feels like it is hurting. Sometimes suffering all with FA is SO hard when you are so far away and when you are told you can go and then you can't...and you miss everyone so much...it is actually painful. May be because I am so emotional tonight...it is hitting me more. Alan and I will be trying to get to the states sometime next year for a holiday I hope...but it doesn't look like I will be at camp. Everyone will be seeing each other and having support and I feel forgotten here in Australia...boy I am emotional tonight. I am here alone. I am upset tonight....and I can't stop the tears from coming...I am opening my heart with how I feel....I am upset...I wanted to see you guys.....I wanted to have support....I wanted to sing to you...I have a song that I wanted to share so badly and now I won't go.....why am I sitting here crying!!!
Yet, has God got other things in store for me while you guys are away at camp. May be...and that is exciting and scary. Something I can only keep between Alan and I. It is something big. Life goes on....this thing matters just as much or even more, I suppose, than coming to camp...something that will lead us on in the future..a decision that is exciting for us.
Most of you, if not all of you, know that I am a born-again Christian. Jesus is my Saviour...He is Lord of my life. I would not have gotten to where I am without the guidance of Jesus Christ my Lord and Saviour. I know some people think that is strange...but I want you to know that He is real and He loves you...He loves me and He has done many miracles in my life...He has given me the strength to refuse treatment that may fix my marrow.....in all this stuff...working about whether to transplant or not....to go forward with the plans Alan and I have or not...I have been reading my Bible as often as I can........and I have found comfort in some passages that God has in the Bible.
Nahum 1:7 " The Lord is good, a refugee in times of trouble. He cares for those who trust Him"
John 10:14 " I am the good Shepard; I know my sheep and my sheep know me"
1 Peter 5:7 " cast all your anxiety on Him because He cares for you"
You know...Jesus cares for me...He cares about the little things in my life...He cares about the big things and He cares about me living my life for Him. having fun....He cares...I recognise Him as my Lord and He recognises me as His sheep...I am safe and the decisions that we are making are in His will...and He cares about those little things to make us happy no matter the seriousness of the sitaion. Jesus cares and will comtinue to lead me the way He wants me to go. I love Jesus because He helpes me make deicisons.
Anyway, that is me tonight. It would really encourage if you would write in the comment section...I need the encouragement tonight....I feel loneluy...it has been a very emotional day....please leave a messege am blessed you you take the time to do that.
Love you heaps,
Charisse
20 comments:
Hello sweetie,
I just want to let you know that I love you and appreciate you.
I'm praying you find a peace about all the "things" happening in your life and will be truely happy.
Love you. Alan xx
Hi Charisse,
I'm so sorry you are struggling so much with everything! I know you have good and bad days and that yesterday was a really bad day. I think it's important that you get your hair done. I know it sounds silly to some, but something like that can really help! After I had Emma and she was in surgery, for some reason I really wanted my hair cut. It sounds silly, but it was something that actually helped a lot. I think Alan was right to offer help to you from your general fund (not that I know how much $$ you have!). Send a picture after you get it done! I want to see.
I hope you know I haven't forgotten about you at all! I have really been very busy and think about you often. I'm behind on almost everything. The past week or so the baby hasn't been sleeping well (last night he woke every hour!)...makes everything difficult when you're tired and sometimes my emailing is what I end up not getting to (not like you'd have a clue! ha..j/k).
I'm so sorry you don't get to come to camp. I was hoping so badly that you would. It would've been so great to see you. If you do end up coming next year, we'd love to have you stay with us some...if it works out for you.
We hope and pray you are finding peace and comfort right now with things. Hang in there, Charisse.
Love,
teresa
Charisse,
It is so hard coming here and hearing you so down. You are a inspiration in so many ways.It is ok to vent and feel the way you are feeling. I cant imagine the pain you are feeling at times but I am always here for you. I now have DSL so I will be online more. The move went smooth. As always you are in my prayers love....Email me anytime you need anything.Love, Marci
Hello my friend, I am so sorry you feel alone and down so much. I wish I could reach through this computer and wrap my arms around you and let you know that there are many people who love you and pray for you always. You may feel alone, but with Jesus, your family, and friends all over the world, you are never alone. Please know I love you and think of you often,
Judy
Dear Charisse!
My friend, you are NEVER alone. God is ALWAYS with you. The God of the mountains IS still God in the valley! There is no problem greater than God. He STILL has control. Ever since the first time I e-mailed you, I have prayed for you everyday. I don't always get to your site but I NEVER forget to pray for you. I know you are struggling so hard, my friend and you wonder if things will ever be right again but I assure you, they WILL BE! All things work together for good to those that love God and are called according to His purpose! You are going through a fiery trial but when you come through it, you will be stronger and closer to God than you ever were before. God DOES love you so much! He truly cares for you. He tells us to cast ALL of our cares on Him. He is closer than a brother. The Bible says that God inhabits the PRAISES of His people. Just praise Him THROUGH all you are dealing with and watch things change for the better. God bless you. I love you.
Marsha Robinson
Hi Charisse:
Thanks for sharing all your feelings with us. You are very important to all of us, and we want you to know that you are loved and cherished! God has done a wonderful thing creating you (FA and all), even though you don't feel like it sometimes. You have such joy to impart to people- you have made my life brighter! But you're allowed to vent and cry and all that stuff! You're a fantastic mother, wife and friend. Never doubt that! I look forward to the future with you, and all the exciting stuff that God has in store! Love you! Leah Radlett
Hello Charisse,
I'm sorry to hear you are feeling so sad and unhappy at the moment.
Try and focus on the positives such as your wonderful, supportive family and your friends. I have a mother's perspective on the FA thing and know how hard that can be to deal with at times, but when I feel down I try and remember all the good things about my life. You have fantastic achievements such as motherhood and completing your nursing qualifications. They are huge things that you have done.
It would be good to get your hair done if you can.
Look after yourself.
Love Cathy R
Hey Charisse,
I'm sorry you're having a rough time of things right now. All things happen for a reason and for reason I guess you just weren't meant to come to camp this year. I have faith though that you will get there soon. If not this year, then next year.
I know what it's like to let FA get you down in the dumps and I know it's no fun. I hope you find peace and are able to get through this down period. I know you will. Continue reading your scriptures and a calming feeling will overwhelm you.
Best wishes,
John Hanna
You know I'm praying, Charisse!!!!!!!
Here in the U.S. we're celebrating Independence Day (and right now I can't even hear myself think! The neighbors are going NUTS with fireworks)...anyway, I know that so many in Australia have given their lives, too so that you could be free, so this verse fits well, too:
Today's verse is in honor of all those who gave their lives so that we could live free!
John 15:13 Greater love hath no man than this, that a man lay down his life for his friends.
Charisse -- thanks for sharing your troubled heart. God is beside you through everything. He has a purpose for His precious daughter's life. Let's pray that you feel strength, comfort and peace as He reveals it to you. Love and hugs,
Kathy in Louisville
I'm sorry you feel like crap lately. I understand that sometimes when too many little things go wrong they kind of heap up and then make you want to scream out loud and then you just cry instead cause you don't know what else to do. I've had those days myself. So I empathiize with you.
As for your hair, have you ever thought of getting someone else like a family member to cut your hair shorter? Or maybe you could just put it up in a pony tail or a bun. Hope this helps.
Love you lots,
Rebecca
Stopping by to let you know that I'm here praying!!!!!!!
Job 19:25-27: For I know that my redeemer liveth, and that he shall stand at the latter day upon the earth: And though after my skin worms destroy this body, yet in my flesh shall I see God: Whom I shall see for myself, and mine eyes shall behold, and not another; though my reins be consumed within me.
Dear Charisse,
I'm really sorry you've been having such a tough time! I know I've been out of touch, not writing much, but I think about you lots and want you to know you are not alone, even though you're far away (well, far from me, anyway!).
I'm really sorry about Camp, too. I bet you do have some other purpose to be at home, whether you know just what that is yet, or not. I hope to hear all about it in the future. I have an crazy idea.....next time there's a full moon we could all go out and look at the moon, and you could sing your song to the moon and it would bounce off the moon and back to us! I bet it's beautiful! I'll never forget your singing at Camp that time.
I wanted to say, too, that I have been enjoying the great posts you've been writing on the listserv. Your suggestions for the handbook are Great!
Hang in there, and know you are loved, All Around The World!!
Rachel
Hi Charisse,
Even though we've never met and I've never left a message for you,e,
I've read your posts many times. I feel like I know you and for some reason am finally leaving you a message. You certainly are a compassionate and caring person and seem to have a good sense of humor too! WONDERFUL qualities that are hard to beat...So even though we've never met, I like you. Which is why I hate to see you struggling so much. I wish I had some magic words to make life easier,but I don't. I have lived a while though and as you know have had heartache myself. What helps me...and maybe would help you... is to think about the positive things in my life(i.e. Spencer is healthy at this time and very happy, our son Conor is doing well and is happy and they are both extremely enjoyable guys)and to try and not worry about the future or things I have no control over.Live each day you've got - enjoy that wonderful husband and darling little boy of yours. The truth is, none of know how long we've got here. I think we just have to take one day at a time and make it our best. I hope we can meet one of these days, and hope you have a good night (or maybe it's day in Australia).
Take care,
Peggy Padden
Know that I'm here continuing to pray!
Proverbs 1:33 But whoso hearkeneth unto me shall dwell safely, and shall be quiet from fear of evil.
Wow! I am amazed and blessed by the wonderful people who have been leaving such supportive messages in my comment section. I really want to thank you all so much. It has meant a lot to me!
Love Charisse
Charisse, if your hair is giving you grief you can always ask me for help. Don't be shy.
Jacqui
xo
Dear Charisse:
My favorite part of the Bible is the Psalms. Psalm 23 where we are reminded that "He restoreth my soul" and Psalm 32 ..."Be of good courage and He shall strengthen your heart, all who hope in the Lord."
Keep on keeping on, Charisse!
Your friend across the Big Pond
Kay Proctor
Eastern Oregon, USA
Praying the Lord will comfort you no matter what the future holds. He'll always be there with you!
Psalms 119:49-50 Remember the word unto thy servant, upon which thou hast caused me to hope. This is my comfort in my affliction: for thy word hath quickened me.
I wanted to
let you know I am praying. The last couple of days
have been dificult for me emotionally as well, and you
are right, the little things do matter, sometimes much
more than the big ones. I can really relate to the
feelings of loneliness you have because I have been
feeling the same way lately, and it is no fun at all.
I love you heaps. I am here for you if you ever need
an ear. Take care my friend. Jennifer
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