Home alone. But it's all good

I am going to be home alone today and am looking forward to it. I have not been well so I think I am going to slowly start organizing my scrapbooking room. I began it about 2 months ago and became so sick. So, it's all been quite the mess. Wish me luck! I'm hoping to get stuff sorted for selling and trade.

An early morning reflection.

I am up, since 4:00 a.m. it is now 5:30 the nurse will be here at 8:00 and I have had to break down and take something for this pain. Now I'm afraid to go back to sleep. I already know I will be groggy. I sure am ready for a turn around on this illness. I have been reading passages in the bible (which kinda scares me, am I just trying to make my soul right because I know what is before me??) I can't help think of my mom, at this stage in my journey. We had such deep conversations the week or two before her death. We talked of our lives, regrets our mistakes. We made a peace with each other and I think it was her 'repentance' I just 'had a feeling' that that's why she said the things she did. I used to just shun the conversation of 'forgiveness' of the past 'bad choices' she had made. I will never know the torture she lived. Losing the man she loved and her 1st born; I was her judge for too long, I had to finally let go. I admit I still have scars but I no longer bleed from those wounds. I have regrets in not being able to drop my life and be there for her more than she needed me I wish I had. Now, I just look back and can only say, I didn't know how sick she was. She often cried wolf. Maybe that is why I am here where I sit, wondering if people feel like I'm crying wolf again or am I just acting like 'her mother' or is this God paying me back or just the devil trying to destroy my mind and soul along with these lungs? I have lashed out at my husband as he has I. I get mad because I feel he doesn't help or he's not here because he doesn't care, and through a few melt downs I think I have misjudged again, and that hurts me too. He doesn't know how to help. He's always been the strong one and this disease has made him vulnerable and helpless. He liked the independency of me being able to care for myself. That was a common attraction. It's like when I was birthing our daughter, he wanted to take my pain away or help but couldn't and didn't know how, so helpless. So, with this he just stayed away; I think he thought if he doesn't see it, it doesn't exist. I think that is how my son handles me being ill as well. I live an hour away and we lead such separate lives. He was attached at my hip till he was about 9 then it all changed. I know he has to grow and be a man, but he'll always be my baby boy. (sorry got off subject) Hey aren't blogs for rambling right???? Back to subject; I was raised in a strict pentecostal upbringing, one would say fanatical. Too much of a good thing at the time. I still know the way in which I believe God intends for us to be and live. I think maybe that is why at this time he has brought me back to his book. I feel it should be the "Book Of Promises" I don't know what drew me to the Jonah story here at 5 a.m. but I was laying on the couch after prayer yesterday(thanks Bruce & Lorie) and was thinking of how 'down' I felt, in Miry Clay so to speak. Then, this morning I thought of Jonah being trapped in the dark guts of the whale and how he was delivered from him. I guess I don't have to understand why god put it in my heart. I am going to put it here; Jonah 2:1-10 Then Jonah prayed unto the Lord his God out of the fish's belly, and said, I cried by reason of mine affliction unto the Lord, and he heard me; out of the belly of hell cried I, and thou heardest my voice. For thou hadst cast me into the deep, in the midst of the seas; and the floods compassed me about: all thy billows and thy waves passed over me. Then I said, I am cast out of thy sight; yet I will look again toward thy holy temple. The waters compassed me about, even to the soul: the depth closed me round about, the weeds were wrapped about my head. I went down to the bottoms of the mountains; the earth with her bars was about me for ever: yet hast thou brought up my life from corruption, O Lord my God. When my soul fainted within me I remembered the Lord: and my prayer came in unto thee, into thine holy temple. They that observe lying vanities forsake their own mercy. But I will sacrifice unto thee with the voice of Thanksgiving; I will pay that that I have vowed. Salvation is of the Lord. And the Lord spake unto the fish, and it vomited out Jonah upon the dry land. I feel like I am in the fish with this disease, but after some prayer and bible reading I know I have to believe in him to bring me out and through all of this. I know I am not going to live forever but I am not ready to give up the fight and let this disease take away my zest that I have always had for life. No matter how I have felt abandoned by some people in my life; I don't think it's always their fault. (like me with my mom) Life keeps us so busy we lose time. Then there are those that are close to your situation and know exactly what's going on and you speak to them and they act like they didn't even know you've been sick. "Oh, what's wrong? You don't sound so good?" Hello??? I have pneumonia some virus unknown to most humans and I'm on home iv's that sickens me like Chemo. Hmmmm, someone drop out of rocket science school? Honestly, really? Then I have a few awesome friends that I have reconnected with that want to get in their car and drive 150 miles to be here to help me right now. I just get scared to be home alone now or even with Amanda. Talk about feeling helpless. She was freakin out the 1st night I was home, she heard a noise in the middle of the night and was crying and practically crawling up my arm in fear. I was like honey it's ok, I'm here and she was like, momma you can't save me! It broke my heart so bad, because in my present state she was right. Well, I have been forcing myself to get up and move a bit, because I have lost so much of my muscle tone, strength and balance. I can only pray and have faith that God is gonna see me through this hurdle. I feel like I have so much 'unfinished' words and personal business, I just don't want it to end just yet. Keep me in your prayers... Till we meet again:-)

I'm home

I'm home on home iv's not feeling that great, but I am home, & somebody missed me..... Just wanted to fyi. Me
:-)

Quick F.Y.I.

Looks like I get to go home; as long as insurance approves home infusions. So, say a lil' prayer for me today. You think it would be the most economical thing, but you never know. Positive thoughts, Positive thoughts!!!! Just waiting for the main Dr. to let me know!

Thanks Cyndi

I have been searching the web and bible passages and I came across a fellow scrapper friend; one who'll I'll meet on the April Cruise!!! I have copied something that has hit my heart and I felt the need to put it here on my blog. As I said, it touched my heart:
'To get something you never had, you have to do something you never did.' When God takes something from your grasp, He's not punishing you, but merely opening your hands to receive something better. Concentrate on this sentence... 'The will of God will never take you where the Grace of God will not protect you.'

There comes a point in your life when you realize:
Who matters,
Who never did,
Who won't anymore...
And who always will.
So, don't worry about people from your past,
there's a reason why they didn't make it to your future.

Today has not been a good day so far...

I decided to go on the hunt for some uplifting prayers etc... these seemed to make me smile and feel better.

Trust in the LORD with all your heart
and lean not on your own understanding;
in all your ways acknowledge him,
and he will direct your paths.
Proverbs 3, 5-6

God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.

Living one day at a time;
Enjoying one moment at a time;
Accepting hardships as the pathway to peace;
Taking, as He did, this sinful world
as it is, not as I would have it;
Trusting that He will make all things right
if I surrender to His Will;
That I may be reasonably happy in this life
and supremely happy with Him
Forever in the next.
Amen.
-------------------------------------------------------
O God,
I am in your hands.
You know me from my mother's womb.
O Wise Creator,
soothe my pain; heal my body and soul.

O Good Jesus,
you went doing good and healing many.
Once your hands raised the dead to life:
restore my health to me.
Once your hands gave sight to the blind:
take me from the darkness of my fears.
Once your hands made the paralyzed walk:
let me walk again
with my family and friends.
Once your hands were nailed to the cross:
strengthen me in sickness and pain.

O Holy Spirit,
Giver of Life,
Helper and Friend,
Source of all good gifts,
bring peace and comfort to me.

If you are reading this please say a prayer for my health and my home situation. I just feel like I keep being kicked in the face when I'm already down. Pray for my spirit to be uplifted as well. God Bless you all for your kind words, thoughts, cards & calls.

Y does he like kickin' me when I'm down?

Well, I am trying to get well so I can begin a new journey. Hubby says he wants out again. ( Sorry for those of you who don't like reading my business online, you have a choice to come and keep reading this so stop now if it offends you. ) I try not to tell all of our dark secrets but I do vent. I just feel so bummed about it all. I can't talk long I am online looking for a wheelchair ramp. I just have to think about who will I get a drink of water from when I can't do it for myself. It is apparrent HE WILL NOT BE my caretaker. This I have to figure out. Bye 4 now. Kinda been a whirl wind with this disease, it drains us all. I am hoping to get our family into some therapy. I go but we all need to be involved. There will be no if's ands or buts, this disease is affecting us all! I'm not gonna let it win!!!!

Sure miss life!!!

Well, just a note since I never get on here anymore, facebook has been fun for me socially. Look me up on there if you are there. I'm in the hospital again. rm 542 1-574-237-7602. Not gonna stay long, just wore out 2 night. I try to get the word out. Especially to those who I know check in through here. Thanks in advance for your prayers! xxoo

I just don't know!!!

I always have so much time in between updates here, I'm into facebook but this is more of a journal so to speak. I have been really dealing with some battles with my illness. It is really starting to affect so much more than my lungs. I have an infection in the ball of my foot; which @ 1st I thought I had broken it. It is an infection, I had it padded and was wearing a soft cast to protect it. I can only describe it as a fire feeling. Apparently this is common in people with diabeties (caused from C.F.) and it could even be contributed to my rhuemotoid arthritis with is also caused from C.F. My breathing has not been good since I went on a camping trip with my family. That campfire smoke did not agree with these lungs. The sad thing about that is I LOVE camping! Another one of my passions I can't do anymore. I am seeing someone to find away to "cope". I have always been proud of myself for being a strong minded person, so unlike my mother. I think I have a little Grandma Fran in me! This disease just keeps taking from me just when I think there's no more it could take it does. The walking thing really brought me down. I thought not breathing well was bad but then not to even be able to walk without it feeling like fire was shooting in the ball of my foot and up my leg, well that was almost more than I could tolerate! I just keep getting all this other new stuff and now I hear oh, it's typical of patients with Cystic Fibrosis. I just feel like screaming.. it's attacking everything...Oh yeah, my kidneys were affected in the hospital too. they were asking me if I was on dialysis yet cause my creatine and bun #'s were elevated..yeah my buns are elevated...my tummy and my chin...they are all elevated!!! Then I get put on so many meds that of course I'm having a pill now for nausea and irratable bowel syndrome...try to much stinkin' antibiotic syndrome!!! Can someone drive me to a mountain top so I can scream and cry at the top of my lungs...oh wait a minute...I only have 23% of my lungs I can probably just do it here...Whah whah whoa is me.. I know, "get over it!" Glad I'm talking to someone, this online journalling just makes me feel crazy...let me guess it's also caused from C.F.!!! One silver lining the Michigan Pulmonary agency has paid for my batteries for my little scooter I just have to get someone to pick them up... I just can't do it...