Wednesday, January 28, 2009

I am just not okay today...

I realized today that out of everything I have dealt with in my whole history of Philip I have NEVER been as sad, frustrated and just all around overwhelmed. When that thought came to my head I thought to in the world can you say that after 18 brain operations, strokes, ICU infections ..on and on? Because this is just something I can not accept. Let me try to explain.
Up until a few weeks ago I would of told you just how sad we were about Philip's stroke and what it has cost him in the long run. I would of told you about how hard all his operations have been. I may of told you about how many holidays he spent in the hospital or laying on the couch with double leg cast or rods in his arm ..I might of even told you that he came so very close to dying last year and my heart and nerves may never be the same again.
But today it hit me...I would go back to all of that in a heartbeat if we could. How fast the things we dreaded and felt overwhelmed about seem comfortable in the light of new issues. How can I explain the fear I feel that Philip is going to lose the use of his left arm and or side. How can I watch him hurting everyday. I mean the headaches and seizures are bad enough. The pain in his right arm from nerve damage has been awful. But how in the world are we to as his parents to watch this and not be able to fix this. The odd thing is...I grew in some odd way to know that I just could not fix the other issues. Maybe it was that the damage was already done by the time we knew and acted...and now I am watching in slow motion and I am scared and sad.
I am never like this. Okay well sometimes. But today is different. In a way it is scary. I think I may of hit some bottom. A bottom where I KNOW I can not fix this. A bottom where God is forcing me to not only say the right words but FEEL the words. I am going to have to give this to him cause by gosh I can not do anything.
I was not ready to go to the appt tomorrow. I had planned to cancel it for a few weeks. So now I am forced to DEAL and THINK and WORRY and FREAK a little ....and I really wanted to cancel this appt. Maybe it is kind of like pulling off a band has to come do it slow and have it hurt...long or just do it. So God is saying RIP it off and Amy tomorrow JUST GO and DEAL with it. I know he will be there with me holding my hand..I hope I can feel it.
I am not mad at God I am just very disappointed that this is the path he has chosen for Philip. And to be honest I am hurt . But I am told he is a big GOD and he will understand how I feel.
In a odd way today I feel further away from God and yet close to God then I ever have.

Thoughts at 3 am.....

Up and can not sleep.I have felt weak and "off" from my treatment last Friday......just been walking around thinking of too many things. I am in a little conflict with myself. I had planned to cancel Philip's appt this week because to be honest I know we are just not THERE yet about making a decision . The brain operation for the deep brain stimulator is not a easy decision and yet we can not do nothing. I am not even sure they can get the dang thing in. Tonight Philip broke down and vented in a not so great way just how much pain he is in all the how in the world can I cancel the appt. Now I feel rushed and forced. I know you all may think I mean to make a decission. That is not what I mean...just to deal with it. Awful...Gosh that sounded awful to how in the world can I say I do not want to deal with it. It is not a deal with is a wrap my brain but even more my heart around this.
I never ever say why..and I am trying hard to not say why tonight. But my mind is drifting towards..can we just not let him have a little break? He is losing strength in his left side and in severev pain in that side and he had a stroke on the right...soooooo ...well it hurts my heart...that is all I can say.
The other issue is..I am having a rather painful operation next week. And I will be required to be down and rest for weeks. So ...well just a example of trying to find that balance between Philip's medical issues and my new ones. Of course if I had my way I would just say forget mine and let's focus on his. But then again I need to make sure I am okay to stay around to be here for him.
Hey does anyone have a zanax?
Okay I said it..just needed to dump it out so now I can lay down at 4 am..cause the alarm goes off at 6 ..
Thanks for being a wonderful sounding board. Where else is there a place to come at 3:56 am and know someone will be here.
I am blessed by each of you. Thank You.

Tuesday, January 27, 2009

Happy Caffeine Day

Oh yes..count down the hours with me...anyone want to go to Starbucks with me? Come on...let's go...and let's get a triple whatever with caffeine..

I am on my way for this dreaded Kidney test....and on my way back to my love relationship with caffeine...Oh how I missed you. Tears may of been shed..

Oh and I did leave out one thing about the yoga pants...imagine me in the pants..inside out..bad enough...right? Well where the crotch is there was this peach colored patch called the breathing patch...I guess that was in case I really decided to sweat in them and not just strut around in them...LOL

So inside my oncology appt with my croych outlinned in a peach breathe through patch.

Nice huh?

Okay..wish me and my Kindey and some artertys luck...I need them to find NOTHING else wrong.

See you at Starbucks...

Sunday, January 25, 2009

Not Me Monday

I have NOT had thoughts about canceling a test this week and rescheduled it because I can not have caffeine for two days before it. I have NOT thought that maybe next week would be a better week to not have my diet coke. I am NOT addicted to my diet coke. I am NOT really.

I did NOT look down at my yoga pants last week in a DR appt and notice they were inside out. I did NOT know for sure that minute that the DR knew my pants were inside out. What in the world is happening to me? Can you imagine how duh I felt for the rest of the appt? Oh I am in control...NOT ...LOL
So then I did NOT spend the rest of the appt trying to figure out if I should say excuse me I need to go to the restroom and take them off to change them inside right or leave them alone. I then did NOT replay how fast I would need to walk to get by her for her to NOT see the pants inside out. Did I mention that I am feeling in control of everything...NOT. So do you think I left the pants inside out or did the excuse me DR I need to go potty?

I did NOT get disappointed when the dogs did not decided to help clean up where Cole had gotten sick the other night. I had put him in the bathtub after he had thrown up for I am not sure how many times. I did NOT want to get Cole out of the tub and see that the dogs had cleaned up the mess. I mean my dogs who will and do eat eat everything did not even go near it. NOT that I would ever want them to do that because I KNOW that would be gross and I would NOT want them to do that to help me ...Gross I know. But my gosh they seem to love the cat box. Okay I am just saying.

I am NOT excited that this is the first NOT me in a few weeks.

I wanted to share some pictures from the other day when I had my big awaited scan of my chest. Some of you may recall that when they scanned my neck before my operation they happen to find some nodules on my chest as a fluke. because I am short they saw the upper part of my chest and on there it was noted that there was some nodules that would need to be looked at after my operation. So last week was my first Chest Cat Scan with and without contrast. There were a few goals for this scan. One was that we needed to know just how many nodules were there. We were hopeful that the nodules were gone now that I have been on meds for a few weeks. And of course we were hopeful that the chest did not show something "bad".
I have not spoken with the oncologist yet but I have spoken with the Radiologist and also on Friday the ID Dr called me. I will know much more after I speak with the oncologist. But for now I will share what I know.
The Radiologist and the ID both said there were three nodules on my upper lobe area. That is better then it could of been. Since we had no idea what the whole area looked like..I guess I should be thankful the lobe was not covered. For now I take the little blessings and make them what I focus on.
I do know that the ID said there were NO nodules under the armpits and she seemed happy about that. So good , so am I.
I also know the nodules are small. So once again that is something I am happy about.
I know that in a person who has no cancer issues ..these would require a long difficult follow up of cat scans every 3 months for 3 years. and IF they grew at all they would have to be biopsy. Wow. So now we will see what the follow up is for someone like me. I know it will be different. But it will be fine.
If I were to be real honest it is disappointing they are still there ...but I know that they are there and we will deal with them.
I go tomorrow for my MRI of my left breast. I hope they get a clear answer. I also should be getting the test results back from the two DNA test for the BRAC test. These are big test for me and weighing heavy on my mind. They were due back two weeks ago but somehow fed ex lost them Christmas eve when they were drawn at my DR office and picked up to be sent to the lab. So they had to be re drawn.
I also have a special Kidney gland test done on Tuesday...and a special test on Wed. So pray that I can keep things going smooth with appt and try to keep things going smooth at home. I am trying very hard to find a balance.
Thank You ALL so much for being such a support team. I FEEL such peace knowing on my harder days that YOU are on my team cheering me on.
We will be doing some serious thinking about what avenue to take with Philip's medical issues. Something has to change and fast. I will be posting about that later this week.
...I am going to try to do NOT get ready...LOL

Wednesday, January 21, 2009

Just some Thoughts...Follow up...

I wanted to address a few things...
First of all I have NEVER been anything but blunt honest and down to earth in my blog. Knowing myself like I think I do...That will not change...even if I wanted it to...and well...I do not.

First let me thank all of you for your wonderful response to my earlier post
As always the "just getting it out" was more helpful then I had thought it would be. Maybe I just needed to say it out loud and have it heard. And then your sweet comments of support was so helpful. What a wonderful group of ladies I have who support me and my family. Thank You all so much.

I wanted to address the comment about getting professional help. I know that I do not need to share this but I want to. It is something I am proud of because it was not easy and yet so good for me.

I spent a year seeing a wonderful man name George who helped me become the person I am today. He was gentle and caring while forcing me to take responsibility for my life. What a year that was. I do not even remember the person I was before George. A added bonus that I did not know about George until a few months into our appts...he spent years in school to become a minister and changed his career. So I got a added bonus of knowledge from George during our appts.

The truth amount of professional treatments is going to erase my hurt or disappointment I have for my son and the pain he has to deal with on a daily basis. Now dealing with those emotions is something I have learned to deal with. But in truth I think I could sit in a DR office everyday and that will not give me the answers I need. So who can give me those answers? God. And so far he has not answered that for me. Could it be I have not asked in the right way? Often enough? Or maybe I have not listened to the answers. I will work on Private and maybe sometimes in my blog...and IF I need George...I will be the first one to dial his number.

One more thing I wanted to address is the private emails ....I know we each have our own reasons for reading certain blogs. I am sorry you had to stop following my blog because it was a "downer" . But what I am even more sorry about is the fact you had to email me and tell me how you felt. I am NOT here to entertain anyone...Being a mom to 4 children and a wife...I do enough "trying to please" I just can not do it daily in my blog. Sorry...It is best you just not follow...Good decision.

Soooo...with all that being said...

How the heck is everyone night going? Are you all keeping warm?

Just Some Thoughts...

The last few days something has been really nagging at me...and to be honest I have not been able to figure out what it like all us women and or moms..I just shoved it down deep and tried to move on. Do ya think it worked? Nope not too well. Yesterday I took Emily to the peds for a ongoing cold . Simple right? While I was sitting there I got that nagging feeling again. We went in and talked to the NP and she was sweet and wonderful with Emily.....and o our way we went. Standing in the elevator I just felt sick. I started thinking about Philip. I started thinking about how scared I was when he was little and I had no idea what was wrong and now how scared I am to know and not be able to fix it. I swear I almost had a panic attack. Why did that happen then and why now? I am not sure. In fact I have no idea. So I shove it down deep and onward me go...

So last night I am watching this show and a baby is sick. I looked at the moms eyes and just felt sick . I had that same look and you know what...I think I have kept that deer in the headlights look for years now.

Back when Philip was little and had his first operations there was not really anyway to get my feelings out about it and him and life , I wonder if that is when the shoving down deep started. You have no idea how filled up I fill with the shoving down deep. Does that even make sense?

I have no idea what got this all started with me...but as much as I want it to go away...I am not sure I have anymore room to shove down deep...

I am so blessed that we have Philip...God could not of picked a more perfect first son for me. Yet I have so many other feelings...worries...fear...sadness..and a little anger mixed with disappointment. Not in God or Philip...just in the way things have turned out. And yet the flip side is...I feel I need to say Thank You God for how things turned out and we have Philip with us. What a mixture of feelings , Huh?

And I just have to say that right now I have a lot on my plate and this emotional stuff is not sounds blunt but you know me..blunt.

So what am I to do?

Tuesday, January 20, 2009

I Got A Award...Weeks Ago

A few weeks ago a sweet blogger friend name Kimber gave me three awards...I swear I am not lazy just a tad slow. Thanks Kimber. I Love your blog and suggest everyone go take a visit.

The rules for these awards are:
1. Put the logo on your blog or post.
2. Nominate at least 10 blogs
which show great Attitude and/or Gratitude!
3. Be sure to link to your nominees within your post.
4. Let them
know that they have received this award by commenting on their blog.
5. Share the love and link to this post and to the person from whom you received your award.
Florida Girl
Family Life

Tuesday's Tribute..It's Time To Give Back

Today I am going to thank my husband Jim for never giving up.

Jim and I met over 21 years ago when we were young and naive and a little crazy. oh Jim , do you miss those days? We met and got married after only knowing each other for 3 months straight out of high school. And through good and bad we have been together everyday since...

I know as a mom it was not been easy for me to be young and a mom to a child who was so sick you did not know day to day if he would live or die. I know it would of been easier to run and maybe not look back. And while it would be wrong...many of young men have done just that. But not my Jimmy.

We have not always done things right or perfect. In fact some days it has been plain ugly. But we did it, didn't we Jimmy? Some of the issues with our lives have been harder on Jim then myself..or maybe I should say we have dealt with it in very different ways. Sometimes I would think and yell that Jim made things harder then they had to be....but he never gave up. And I have a feeling he will be right here with us for the rest of our days.

It is no secret that I am not well right now. My husband cares. He cares with every fiber of his being. And some days that all I need to know to be okay. On days when I feel alone or sad....I know Jim is here and willing to listen. And lately he seems so gentle with his ways with me. Over protective and sweet . I see a strong man being my husband and being a dad and yet a vulnerable at the same time.

So Thank You Jim for taking such good care of me and our family. No we do not do it perfect but we get the job done...and that is what counts.

I love you more then you know. Hey wanna do some laundry when you get home..LOL

Monday, January 19, 2009

Baby Steps

I figured out today that what I have been trying to say is I am having a hard time not feeling like myself. Feeling out of sorts, tired, cranky and on edge. That about describes me.
So as I laid in bed this morning I decided I had a choice. I could lay here and feel the same way day after day or I could drag my self up and make a plan. Know what I did?
I laid here and made a
So my plan is simple. My plan is to just try not to worry so much about how I am suppose to be and to just BE..simple huh?
This is a busy week with test. And since I know so many of you are great prayer warriors I wanted to mention the dates so maybe you can remember me on those days.
I am expecting some pretty important blood work back this week maybe as early as tomorrow.
I have some follow up blood levels done this Wednesday.
I have a follow up chest CT on Thursday for the nodules on my chest.
I have a MRI of my left breast on Monday.
I have a special kidney study done on Tuesday of next week.

I am going to TRY hard to not control the what if's and the out comes ...I am going to just be there with my medications on board and behave for the

Baby Steps...small baby steps. I can do this...and I will. This is not the end of the world. I will come out of this stronger . I have so many blessings in my life ..I need to focus on those .

I hope you all have a blessed day.

Sunday, January 18, 2009

Speaking of giveaway

Speaking of a great Giveaway. Now if you win and come from my blog...we will split the goodies..only fair right?

If ya go over from here tell her I sent

Good luck..I hope WE win.

Something For The Kids...Giveaway

Have not had a giveaway in a while and today seems like a great day to do just that. Don't ya think?

Who wants to win this cute little webkins Pig?

The rules are simple...comment on a cute story about your child and their love of their webkins...or wanting a webkins...

Next Friday Cole will pick a winner and off to the post office we will go to mail your piggy to you.


You know I am sitting trying to figure out how to put my feelings into words. Maybe I should not even blog about it...but I feel like I will want to come back one day soon and see just how far I have come . And yes I know one day soon I am going to come here and be in a much better place.
Besides the emotional business of healing from my surgery and my diagnosis. The physical has started to really take a toll. Over the last few days I have felt pretty weak. It takes nearly nothing to get me out of breathe and needing to lay down. I feel like I have ran a marathon after I take a shower. I know this is part of my recovery and the new meds I am using for my treatment. And even if I know it is all normal..I just hate feeling this way. I felt pretty bummed this weekend..Emily wanted to bake and continued to ask me to just get up and bake. I am sure she was getting pretty over hearing me say In a while...But we did get up this morning and baked some banana bread. She is getting to be a wonderful help in the kitchen.
Finding a balance of how far to push myself is the key. I need to rebuild my strength but not overdue it. Balance my emotions and my physical activities. Is there a book out there to help know how to do both of these? LOL
I sometimes think that I am my own worse enemy. I spend too much time trying to figure out how to be vs just being. Does that make sense?
I am open enough to say that In have never had a solid sense of who Amy is. But I do know that I do not want to be known for being sick. I want to be something and someone who is who she is...based on me..not being a mom of a child who is facing hard medical issues or a rotten diagnosis.
I have been thinking I need to let things be and let God do. I read that in one of my comments on here and it is wise words. It sounds so simple and yet I struggle doing it. I think I need to just open my bible and find a place to start to read. Being a young christian I sometimes find the words a little hard to understand...but the message is clear.

I have felt such love from all of you. The cards are just such a blessing. The written messages are so special and will be kept. The gifts..well okay I love getting surprises...Good
What in the world have I done to deserve such support and love?

Friday, January 16, 2009

Update On Philip

I want to thank you all for the wonderful support with Philip. You know I do not know how else to put I will just say...Philip is having more and more issues...I just feel like we are behind on things instead of a step ahead. Kind of hard to figure out a plan of action.

So speaking of plans of action..let me give the update from the big appt last week. It has taken me a long time to digest this and I still am not accepting this as the final word. I just am going to take a while for Jim and I to think and wait and see what the right path is. I so have to remind myself that...


This has been so true with many area of my fixing , planning, and deciding what we will do to fix things with Philip.

The bottom line is there is a serious issue going on with his left side. His right side is the one that had the stroke. So needless to say the pain is awful enough in the left side. But the increased weakness in the left side is the saddest and scariest thing that can happen right now. Well not really it could be worse BUT for today it seems bad enough. I know you moms understand what I mean.

Philip seems to have a central degenerative disorder...There is no cure for this. Just treatment. Right now his treatment has been very strong pain meds...steroids...and patches and some added seizure meds that can sometimes with pain...not with the weakness or stop the condition.

I hate hate hate Philip being on such strong pain meds. It is not is not safe and it scares me for addition. I know we need a balance....pain vs safety. I need to be fair to him and know that he needs them and not resent that he needs them. Does this make sense?

So the option ...a deep brain stimulator. Doesn't that just sound scary. Well it is. It is to help control the pain. But for Philip it could be a miracle help with pain or it could cause a major problem. It would be places deep in the brain behind the base of the skull. Just a reminder he has the brain stem banana shape mass/cyst. He also had the left in old shunt Cather there from the operation that caused the stroke.

With the brain stimulator it would have a the risk of infection is always high...and he has the shunt and the left over Cather.

So....we left the pain management Dr with that information and me having a headache and heartache. We decided to up the seizure medication. And for now Philip is taking a once a day strong morphine long acting pill. And as needed for breakthrough pain Perocett 10 mg.

That is why I was so concerned earlier this many meds on board for pain and yet he was curled up in a ball ...

I know I have dumped this out here...and I am not sure it even makes sense...

But I am on my way out the door for a big medical day for me. I have some big labs due today and maybe some starting of treatments. So let me go get ready mentally and physically.

I hope you all have a very blessed day. Are you as thrilled that it is Friday as I am?

Wednesday, January 14, 2009


I will share more about my day with the DR later.
But I wanted to come and ask you to keep Philip in your thoughts. As you know he has been having some pretty serious ongoing medical issues. Today when I got home I found that he is having a really bad day. One of the worse in a long time. He is in bed and has had his morphine earlier and now a different pain medication. He is in a lot of pain and his head is throbbing. Of course I always worry about the head due to the shunts and the dreaded brain stem issue. I hate when he is in pain and there is nothing I can do to fix it for him. The Dr knows what is going on and will speak to the ER DR if we can not get this under control soon.

Thanks for the wonderful support for Philip. We will get through this and tomorrow will be a better day for him....

Tuesday, January 13, 2009

Checking In

For some reason I am having a hard time posting in my blog. I feel out of sorts and a tad overwhelmed. I think everything has caught up with me. I have been trying to do more and of course that means I am really sore. But that is part of healing. It will take time..but it will happen. One thing is for sure my surgeon was really honest when she explained the details of this has kicked my butt. I ended up sleeping quite a bit this weekend after my appt on Saturday.

I have a busy week ahead. I have some appts with the oncologist and the ID DR. I am now on a 12 week course of antibiotics to try to deal with the infection. I am due to have some specialty blood work done Friday. I have a MRI of my left breast, a cat scan and a pet scan ( PET is in 4 weeks) . I may glow by the time I am done. I am hopeful to have some good results from some of my blood work that has been pending. I am very hopeful to have some good news to report later this week.

Philip and I had our first conflict with appts. We both have things scheduled for tomorrow. After speaking to his Dr , it was decided to hold off on his appt. He was due to have a muscle test done...and in truth Philip is not in the best health right now to have that done. Plus his Dr felt my appt was more important. How nice to have Philip's Dr care about my appts and medical condition. Just goes to show what wonderful Dr Philip has.

Speaking of Philip, we have gotten some hard news this past week. Still working on the details and taking some time as a family to digest everything. We also have had to make some hard decisions regarding his education. So if you could please keep Philip in your prayers . He is such a wonderful young man . I hate that he is struggling so much. I can not help but feel like it is his time for a BREAK.

I am having a issue with my face. Lately that seems to be a major issue. The medication has made my face swell some days and turn beat red. It has become paper thin in areas and if I rub it easily can bleed. I know this is a side effect of the meds and it is not constant. But it is annoying. Plus I will be honest and say..I am pretty sure my face is going to scar from the infection I had on it after the operation. I hope not. I know it is not the end of the world and a small price to pay.....But I hope it heals without scars.

I am trying hard to pull something from real deep inside of me. Some days I feel strong and others I feel like a mess. I have had some pretty serious anxiety lately. I have never really had a issue with it before and I must admit I hate it. I find myself worrying about things that are not important or things that are pretty scary. It has me feeling pretty alone. I know in my heart I am far from alone...yet I feel pretty alone most days. I am taking baby steps. One appt, one day at a time. This too shall pass...right?

I am going to wake up tomorrow with a fresh outlook. I am going to walk into the appts tomorrow with a positive is that for a

Sunday, January 11, 2009

Kitchen update

I thought I would post some pictures of the kitchen. From where we were to where we are and oh please let me able to paint a picture of the final kitchen soon.

As you may recall we had water please ignore how gross it looked when they pulled everything out and let's try to focus on how wonderful it is going to look when it is complete. Complete...ahh....just the thought of it...

Follow up : If I had everything ..what would I wish for?

Wow you guys had some great thoughts. You are all very blessed and very wise. I received a few emails asking me if I was depressed. not depressed..just frustrated. But as I am learning that is to be expected and is okay.
The reason I posted that question yesterday is...

Jim was driving me home from a hard Dr appt and we were talking. I found myself saying...I wish this and why can we not do the testing this way vs that way. Jim added his thoughts in and after this long conversation I was completely frustrated and said..well you know If I had everything I wanted...what would I wish for?

It was a light bulb moment for me. If I had all this go the way I THOUGHT it should would I grow from this experience? It would be such a waste of time in my life if this time period just was..I do not want to give up hours, days, weeks maybe years of my life to fight this illness and not come out of it any stronger or wiser.

So my attitude for those crazy days that I think I should be able to control...

If I had everything....what would I wish for?

Saturday, January 10, 2009

A Thought On A Hard Day

If I had everything I wanted ...what would I wish for?

Friday, January 9, 2009

I Love Great News..Shannon Update

Shannon is doing well and even starting to make some jokes...She is one tough lady. I am looking forward to hearing that she is home and healing.

Here are some updates I know all of you who prayed for her would like to read how well she is doing. Let's keep praying..that soon she will be home.

Update and even more Updates and to end with this great Update.

Thursday, January 8, 2009


Finding a balance. That is on my mind alot lately.

This afternoon I have been in just a way. I have been looking forward to this day being over and going to bed...but now it is 12:30am and I can not sleep. So as many of you know when I have some "issues" and it is 12:30 am I blog.

There have been a lot of things going on this week. I have had tons of appts. Tons of testing. Tons of waiting. Tons of stress.

Tomorrow marks 4 weeks post my operation . Three weeks being re stitched and drain issues. My recovery is slow but going in the right direction. I am having a issue finding a way to ease back into my life. I feel that in some ways I am expected to just jump back to normal. And I just can not. I have never had something knock me down like this operation has. In fact some days I feel like I am taking one step forward and two back.

Having the kids home for break was much easier because there was no getting up early to get them off to school or trying to figure out schedules around appts . Part of my frustration seems to be...trying to heal..trying to be a mom...trying to be a wife...and trying to figure out the best way for me to beat this illness. Sometimes I get the feeling everyone around me wants to me move on and just deal with it. I am pretty sure that is not the case but it seems that way. Sometimes I can move on...but sometimes I seem stuck..It is a long road and I will just need to find a way to make it work . I do not want to dwell on things but I also am not feeling like I can jump back into taking care of everything here in the house , the kids , and myself. But isn't that what a mom and a wife do?

Okay how is this..Being seems that my family and some friends are over me being sick and we are just getting started. There I said it. Bless their hearts. See you say Bless their hearts to ease the rude comment I made about them.

I guess I am feeling sorry for myself and it is not a pretty thing. I just am feeling low tonight. There are just some "issues" at home that remind me that in many ways..I am the one who will need to take this on ...and beat it..

Tomorrow is a important day for Philip with a DR appt. In fact we have been waiting for this appt for a few weeks. Please keep him in your prayers. He is miserable and needs to find some answers to help him. WE have had to make some pretty hard decisions that had to be made this week regarding Philip. I wish I knew how to help things with Philip. I feel like a failure most days with his issues. Sure wish there was a clear path and if not then maybe some cliff notes.

Sorry to be a downer. I just feel a tad out of sorts and overwhelmed.
Tomorrow will be better..Until then I am going to go take a so needed pain pill and get to bed.

More chances for us to share..

Ya know the win we share..I can have one earing and you can have the

Prayers For Shannon

Today is the big day. The day Shannon has been waiting on. Today she is having going into the hospital with a broken heart and coming home healed...I just know it. I pray that today she has her heart fixed and can move on and enjoy the simple things ..such as living day by day .

Please take a minute to look at this post to give more details about her operation.

If you would like to post a prayer or good thought here for Shannon..I will pass them along to her when she is home and healing.

Tuesday, January 6, 2009

Calling All Prayer Warriors

Many of us know that this week Shannon is facing a serious operation. Shannon is just a wonderful lady. One night I had a a rough night and wrote a post called Raw Emotions. The next day I got a wonderful email from Shannon. She shared some personal thoughts that were brought out when she read my post. It was hard for me to put those feelings out there..what a true blessing it was for me to know that Shannon found something in there for herself also. Shannon and I share many of the same fears I am sure.

Shannon also mailed me something that was so special over the holidays. How sweet of her to think of me when things are going on in her life.

Shannon is having Heart Surgery this week. I have no magical words for her that have not been said. So I thought this may say more then anything I could say.

I would like to do something extra special for Shannon. I would like to have everyone come here on Jan 8th and post a special message or prayer for Shannon. It will be neat to have this to link to her when she is home healing.

Your prayers have always lifted me up and showed me that I CAN and WILL be okay. So I am excited to have the best Prayer Warriors out there for myself and also Shannon.

Monday, January 5, 2009

Tuesday's Tribute..It's Time To Give Back

So Jay has started this new Tuesday idea. I love the idea of focusing one someone else vs myself. Because the truth be known I am about over myself..and maybe some of you are over me

So...what am I to do when there is a list a mile long of people who have supported me in more ways then I can ever begin to explain?

This week I will play tribute to My special Friends at CCS. Check back cause there are so many tributes to give..we may be here for years to come. How is that for a positive attitude?

I got the biggest surprise earlier last week. Philip's school sent me these flowers. They were so pretty and such a BIG surprise. One thing I wanted to share is how much the card meant to me. I opened it and sat on my bed and cried. Philip has been at CCS for 13 years. Over the years I have gotten to know so many wonderful special teachers. When I opened the card I read messages from all the teachers and staff at CCS. Teachers starting with Philip from first grade signed this card. I always have to laugh..I knew most of them before marriage and babies. I guess that is why when some signed the card they had their maiden names on there too. LOL.
This card was such a special message to me. It is something I will keep forever. Thank You for the beautiful flowers...Tulips are my favorite and these were beautiful.
Also a special thank you to Miss Bailey. This may sound silly but she has the sweetest voice when she says Good Morning when I call school about Philip. She sign's Philip's guest book every time I update. And like yesterday I get out of the blue this sweet email asking how I was and telling me she is there if I need to talk to her. Plus she is a great message giver to Mrs Earls the principal. LOL. Love ya both.
I also wanted to thank Mrs Earls ( Philip's Principal) at CCS. First and most important for helping me help Philip with decisions about school. She has held my hand in his education for yeses now. She blessed me last year with a call telling me she was going to have someone come in while Philip was in the hospital to help me get the house ready for him to come home. I can not even begin to tell you what a blessing that was for our family. You will never know the weight that took off my shoulders. Thank you for caring and offering so much love and support for Philip and our family.

More NY giveaways.

Go check out this great Blog for wonderful giveaways..
You win...we

Wonderful NewYears Giveaway

Being the giving person I am..aka..I wanna get a entry to win..I am sharing with you a blog that has awesome giveaways.
I already have fallen in love with a necklace she is offering as a giveaway ..You win we share..repeat after

You know the rules..We made a

Okay you guys know the deal...I tell you about these contest and if you win we share..Right? LOL

Okay there is this Great Blog That is so filled with Give aways..I think I need to pitch a tent there and stay.

The best thing about her site is..The links to some very cool stores..

Now repeat after me..YOU win..WE share..Deal?

Few Things At Once

Can I just say that today is NOT going great. I woke up swollen in my neck..just part of recovery. Sick from my antibiotics . Started to itch and guess what? I have hives...I am getting a tad closer to that WHY ME question? LOL. I am NOT going to keep saying things could get worse..cause that is not working lately... so instead I will say why NOT me? Cause this too shall pass...right?
Just as I was typing this I got a call from the old oncologist office reminding me of a appt next week..what a nice feeling to think I am not with his practice anymore. I am so blessed to of found the DR I will be treated by now. That alone makes this all okay.
Since I can not leave the house...can I conduct a little business from bed rest?

Just curious if anyone is looking for some Wii games...I have a few I am planning to list on ebay but thought I would ask here first..cause I hate dealing with

I am open to prices...really I am...and I am on pain

I have a
Sonic Tennis game ..opened and not played..wanna ask me why? I am sure someone I will answer..cause they got two and two different children opened one each..Crud.
Sonic and the secret Rings..sealed
Speed Racer..sealed

Also if anyone is thinking of buying a IPOD anytime soon..I am thinking of selling Philip;s Apple 30G ( works perfect) still has about a year left on Best Buys warranty. Philip is really wanting a 8g Ipod when he is at DR appt, or ER or hospital he can be online...who can blame him, right? He spends so much time away from home dealing with would be nice.
Best Buys online has it for $199...
But of course money is I thought...well he does not need to have both IPODS so maybe I can sell his and use that money towards a ipod touch.. Is any of this making sense?

Now for some freebie stuff...

I want to offer something I have that works fine but I have no need for..I have a JVC camcorder..just needs a battery..and I may even have one of those here. It is a small handheld camcorder...a few years old...and just a basic one. We have a Sony one we got door buster two years ago..and my camera has a camcorder I am hating it just not being used. I do know that any extras can be such as batteries can be bought online..
I would love anyone who does NOT have a camcorder and would like one to comment or email me and tell me why you would like one..and what you would video... TAKEN BY MY SWEET FRIEND LISA...

Some of you may know that I lost 95 over the last year so as you can imagine I have some clothes that I bought along the way and did not really get to use. I have a few really cute pretty dresses that are brand new or worn once..size Large. Now since sizes are different I will say this. I am 5'3 and these fit me when I was about 175ish. I hate to just get rid of these because I really like them. But I also know that I can not wear them and someone can get use out of them. If you are interested..let me know...Free if you promise to wear them.

Oh and since I am putting freebies on here..I have a cute pair of leather sandals..kind of slip on's,,light brown leather size 7..worn never..

And I have a DH who will not do dishes, wash or cook..Oh sorry did I blog that? LOL

Sunday, January 4, 2009

Free Offer By David Bowman

Free Offer by David Bowman Ends Soon!

Thank You Then I am strong for posting this. I spent some time looking at the prints and I am having the hardest time picking the one I like..I have two that I can not decide between. These pictures were beautiful and just what I needed to see today.

Just look at these beautiful David Bowman prints! Shauna, at Trying to Stay Calm, talked to David and got his permission to post these.

I wanted to share these beautiful pictures and what the artist has to say about each one of them! You can ALL win a FREE signed 8x10 print of your choice (out of the three prints), by copying and posting to your blog or website this whole post! After you post then send an e-mail to David ( with your website or blog address telling him you posted it and that you read about this offer on my blog. Also send him your name and mailing address and he will send your signed 8x10 print of your choice :) Hurry because...
*This offer expires Monday Jan. 5th at noon!!*

David Bowman: has had a passion for art ever since he could pick up a pencil. He loves creating images of the Savior that inspire and uplift. Along with his Christian fine art, David has also written and illustrated a series of scripture storybooks for children titled "Who's Your Hero". Check out his website at to see more of his precious art.

The Savior tells us we need to become as little children to inherit the kingdom of God. I've often wondered what it is about little children Jesus loves most, and I think its their innocence. They are clean slates, seeing the world and others through untarnished eyes. Their hearts are pure, without the baggage of cynicism and self-doubt. In this piece, I've tried to imagine how a child would act upon meeting the Master for the first time. Without reservation or inhibition, I think he would simply want to play with Him. He would be at complete ease, allowing his pure little heart to soak in the love and laughter of His pure, infinite heart. Its no wonder Christ delights in these little ones and sets them up to be our examples.

One of the greatest human needs is a sense of security. In all aspects of life, we naturally gravitate towards anything that makes us feel safe. In this piece, I wanted to convey a sense of complete peace and calm like only the Savior can provide. It's a security that allows us to rest assured, without fear or worry, when we put ourselves trustingly in His arms. Little children have that inherent kind of trust in their parents, so it's fitting that the man and girl who modeled for "Security" are actually father and daughter. They generated
the exact feel I was looking for.

"My Child"
This piece conveys an intimate, up-close-and-personal feeling of the Savior's love. Notice how all the lines draw your attention and point towards Jesus' face in the center. I chose the name "My Child" because the only thing that could compare (even remotely) to Christ's compassion for us is the love of a parent for his/her child. This image is also intended to put things in perspective. Above all, we are God's children first. He allows us the privelege of experiencing parenthood for ourselves and we are entrusted to be the mothers and fathers of His children here on earth.

Medical Tid Bits

I have been up all night in pain. It seems that as I heal I keep taking steps backwards. But after speaking with my surgeon, this is what is to be expected and considered normal for this type of operation. Okay let me just vent for a minute. I am over it. I am ready to feel better so I can work on getting better. The surgeon has explained to me in detail more then once just how complicated the operation was. And trust me I believe her. In many areas my healing has gone well. My scar looks much better then I would of thought it would. It still has a long way to go but so far I am impressed. But there are other areas that are just causing me major pain and slow healing. I have some nerve damage that has caused me pretty severe pain lately. I have a deep painful burn that goes up the left side of my face up to my eye and travels down to my upper chest area. The part that gets me most is...when it burns on my neck and face I always seem to reach to touch it..pat it to stop is just a habit that I NEED to stop. My face and chin have this awful numb marshmallow feeling that makes me sick EACH time I do it. Ya know when your dentist gives you the numbing shot? And as it is wearing off you have that gross feeling..that is what I have along with the burning every day now. Every time I touch it I get sick to my stomach. You would think I would learn...

The DR explained to me the nerve pattern and where my damage is. Our hope is that this is a temporary issue . Time will tell.

Along with this I am anxious for my incision to heal and stop hurting. The Dr was is going to be a long recovery. But I will recover. I will....I will....I will...I keep saying that many times a day. And so many of you remind me of that in my blog on my harder days.

I am still waiting for the PET report. The holidays have really played havoc on all my medical test reports. I can assure you...Christmas and New Year holidays win over any test reports...just ask my Doctors.

So without having the final report back from the PET scan I can only base my information on the neck path and blood work etc,
The form of cells that showed up in my pathology is treatable...very treatable. Thank God.
We are not out of the woods until the PET scan gets back but based upon the path report ..things are better then they could of been. With this being said I was reminded many times that this is a LONG recovery. But I like the fact that I am and will recover. While this is a hard issue to deal with...It is good news.
Now with respect to the breast lump. PET Scans are not good to help with the breast. I will be having a left breast MRI sometime next week. I also have about 2 weeks left for the BRAC test results. The Dr has made it clear that if that comes back abnormal we will do drastic surgery. Prayers for that test to be clear is so important. And of course if the MRI of the breast is bad we will follow up with whatever the DR decides.
We are still waiting on the PET to know more about the nodules of the chest and also to see if there is anything else going on in the neck or anywhere else.
We are still waiting to know what autoimmune disease I have that is wracking havoc on my body. As soon as the test results are all back we will know what it is and how to deal with it. The oncologist seems as if not more concern with this as she does the Cancer issues. I have full faith she will get to the bottom of what I have, how to treat it, and help me deal with it. What more can I ask for?
I think the biggest issue we have right now is a infection...a stubborn infection that is a worry to each Dr I am seeing. After four very strong antibiotics, by mouth and intramuscular. The infection is still here and keeps showing it ugly side.
Many of you may remember a few weeks ago I had a set back that lead to THIS. The infection seemed to clear up and then went crazy leading to this...

Notice anything odd? My face is having to be covered in the areas that the infection is flaring up.

Now here is some ...interesting or odd ..scary news. The same thing that grew from the culture of my face was in the tissue from my neck also.

The DR explained how the lymph nodes are a draining system for infection and goes on and on.

But not only does it cause this on my face. It causes me to be sick. Fevers and chills . The sores are painful . And the cleaning and bandage changes are hard. Plus I have been having major stomach issues due to the strong antibiotics. To be blunt it kind of stinks. Okay there I said it. It stinks and I am over it.

But due to this we will be dealing with a infections disease Dr this week . The oncologist spoke with him and filled him in on everything. She said we had to get this taken care of now. So I am looking forward to them figuring everything out. About the time I think everything on my face is cleared up it goes crazy. Call me vein but I hate the bandages on my face. More to come on that topic on NOT ME MONDAY.

I know I gave alot of details in here...maybe too many. As over whelming as it sounds in is just a course we are talking. And learning Patience. It ain't pretty but we will get the job done.
This too shall pass...Right?

So in summary...LOL ( that is what is on the bottom of my radioligy reports)
Waiting on PET results.
Will be having left breast MRI done
Waiting on BRAC test
Seeing ID DR for infection control
Cat scans every two weeks for follow up's

Plans to start the treatment of steroids to lower body fighting it's own cells are on hold until we get the infection cleared up because of the steroids lowering my body to fight the infection. Make sense? It did when the DR said it.

With all this being said..

I feel blessed that I am on my way to getting better. I have such faith that with time I will be feeling better and more in control of my path to getting well.

And while I wait for all that to happen..I am learning to be patient.

MY goals for this life lesson is learn harder on my new faith . Each of you who have sent cards and letter...visit my blog and leave the most inspiring comments..have shown me so much Grace. I FEEL the support and prayers. Some days that is the best medicine. Thank YOU ALL.

Wanna See A little Progress In Pictures?

One Row of Cabinets up....we have a long way to go ..But I am so excited to see how it will look.

Can I Get A Woo Hoo?

I bet you guys are shocked that I baked a cake to celebrate today. You may be asking what is so special about today.Ummmm MY Miami Dolphins are in the play offs. You may be thinking ...oh no big deal. NO BIG DEAL. IT has been HARD ..VERY HARD to be a Dolphin fan...Let's just take a look at how far we have come.
league-worst 1-15 record in 2007
A kick Butt season record this year..
Now you can say a WOO HOO

Cole loved the cake and offered me a BIG kiss after he had a taste.

Oh and I guess most of you know I did not bake the cake due to this little issue.

Saturday, January 3, 2009

I Need This Attitude...How About You?


There once was a woman who woke up one morning,
looked in the mirror, and noticed she had only three hairs on her head.

Well," she said, "I think I'll braid my hair today?"

So she did and she had a wonderful day.

The next day she woke up, looked in the mirror and saw that she had only two hairs on her head.

"H-M-M," she said, "I think I'll part my hair down the middle today?"

So she did and she had a grand day.

The next day she woke up, looked in the mirror and noticed that she had only one hair on her head.

"Well," she said, "today I'm going to wear my hair in a pony tail."

So she did and she had a fun, fun day.

The next day she woke up, looked in the mirror and noticed that there wasn't a single hair on her head.

"YEA!" she exclaimed, "I don't have to fix my hair today!"

Attitude is everything.

Where In The World Is Everything?????

Thanks for asking ....
Ummm...yes paper has become our friend. There is no cooking because I have no stove, no sink, I can not even find the toaster over BUT...I do have the microwave in the we are good to go...Ha.
Amber...I am going to ask him today what he was smiling at...really...I think he was laughing at my mess HE helped make..
Lori...I bet you could not sleep last night cause I left you here I am first thing to share the rest of this wow story..just for

Let me explain something...
I am excited about the idea of a new kitchen. But we had damage in our kitchen from a slab leak and the drain collapsed. We are blessed to live in a house beach side in Florida. But it comes with a price...our house was built in 1955 and well that means everything seems to be having issues. So yes it is exciting to get the kitchen done for us..not our insurance company. Ha. The floor was drilled into and the damage there...and this was all started before I had my operation. But the timing with the mess and our finical part could not of come at a worse time. With that being said...Let's move on to the pictures...Lori was left hanging and that is so not cool...

Now notice that we get to have our juice and crackers and the microwave in the Living Room...The kids are loving this...Mommy is not. Daddy seems to not care..MEN..ha

Umm...does your snowman have crackers, juice and onions? Hummm

Oh and just to clear something else up...every closet is cleaned out the living room and dinning room. Seems like if you wanna have a simple door replaced in a 1955 beach house ..the rods are hung into the moving out those clothes...and boxes ..and trash. LOL

And yes...Jim's and my clothes got to use the rack. The kids are wherever they can find a place. But then again they are use to being on the floor and behind the bathroom door ..Ya know it is true Moms..

Umm...My Kitchen Or Lack Of

Needless to say I would NEVER suggest anyone have major construction done while trying to heal from major surgery and a life changing event ...and on pain medication. Now you may be asking yourself how I know that ....ummm...cause we were in the middle of having some repair work done in our kitchen before any of my medical issues were found.

Our kitchen was damaged earlier this year when there was a major foundation leak. Insurance has helped up with the re plumbing of the pipes . This meant we had to have the kitchen floor jack hammered up and a repair done. So this leak caused major issues that had to be dealt with. Plus the house was built in 1954.

Would you like to see what I am talking about?

Does this mean I do not have to do dishes?

 that my cabinet? Or what is left of it?

Umm...okay no stove means Take out?

No dish washer means Paper plates?

One last picture before the stove, dishwasher and the sink are GONE.

Notice the guy in the window..why is he smiling so big..does he know something I don't?

Oh yes...that a person should NEVER do this type of work right the holidays and while trying to heal from a operation.

He looks too happy...dang

Anyone wanna know where everything is..that was in my kitchen? I bet you wanna know..aka..I have more pictures to I will pretend you

How about I share those tomorrow? My pain meds are kicking in and I need them to work before I post anymore...

Check back for more OMG who in the heck did you do with all your junk...

Friday, January 2, 2009

PET Scan And A Sign

First and very important we are still waiting to hear back for a full report from my PET SCAN. I am going to blog in a different post about some test results and medical issues. But in this post I wanted to share some pictures and a story I think some of you may think is pretty cool.

Notice how nice the waterfall is on the way in..see how happy I look...something said for NPO and overdue for pain meds. Did I mention that it hurts like heck to be upright? And I needed my pain meds? Oh okay just wanted to make sure you got the full story.

So here we go again...The chair to start the IV for the meds...

I sure hope they can find that vein...I seem to have a issue with them lately.

Now Did ya'll know that when you get the meds you can NOT TALK? Here is how I found out. The nice DR came in and talked to me about my medical issues and explained the procedure. Then after he gave me the shot in the IV he says...Oh I forgot to tell you that you can NOT talk for an Hour. Jim got this look of pure heaven. Seriously...he looked like the kids did Christmas morning. Pure JOY.

Okay Listen...I have things to say. Or should I say that Jim had things to say. He decided to say some of the stupidest things he has ever said KNOWING I could not say anything. Okay well I am sure he has said even more stupid things but not when I could not tell him how crazy he was being.

I tried to do hand signs but he just did not get it...or was it that he was taunting me?

So finally enough was enough..I got me a pen and paper and I told him what I thought...He read it and then threw it away..with a smile on his face..Humm...

Okay ..Time for the test...finally. Did I mention that I was hurting and needed my pain meds?
Cause look how hard that small thingy is that I need to lay on..oh and yes..I was wearing some PJ pants because when mom is sick wash is done..and if I could of talked ..we could of discussed that also during our hour together...

And of course I was a tad worried what in the world they would find while searching my head to my toes...

And I had things to say to Jim....oh yes I did. LOL

Now do you guys notice anything about this machine?

Look closely....

More close..

Do you see what I see?

As I was being wheeled into the machine I prayed for a peace . I prayed for the test to show a clear idea of what was going on....

And I thought about how different it was to be the one having the test done vs waiting on the results for Philip. As I started to think more about how brave Philip has been for so many years...

For those of you who are new to my blog. Philip is my oldest son who is one of the most brave people I know. And to think..I am learning from him.

I looked up and the machine moved me in ..and look at what I saw...

That was my nudge to know would all be okay...

Oh and then I talked the whole way home...and took my so needed pain pill.

A Few More Thoughts...Imagine That

So the other night I shared some feelings in my blog. As always I am blown away with the support and comments. Have I mentioned that each of you have helped me more then you know. I feel such peace when I read your comments. One wonderful thing is I know when I am feeling weak or worried...I KNOW that many of you are praying for me . What more could I wish for. Thank You.

With that being said...I want to clarify something. If my post came across as I was worried what people think when I blog, then I did not explain my feelings clearly. I know that many of not all of you want me to share how I am feeling. I also know none of you expect me to feel or act a certain way. My issue is ME. I have this idea in my head of how I am suppose to feel or act or express myself. In the past I have read blogs such as sweet Stellan 's mama and think wow..what faith she has. I want that faith also. Heck I want to go live with her and talk faith and trust with her everyday. That could be hard she does not even know who I I want to be able to come here and say that I KNOW and FEEL a certain way. So see my is not my fear of any of you judging me...I am judging myself.
I want to be strong and sure and filled with this certain peace daily. But in reality I do not feel that way always. And yes I know no one does. My problem is..on the days I am feeling so positive I do not have that deep desire to blog at 2 am. My 2 am post come in the times that I am feeling a tad less then sure or positive or strong. So maybe that is why it may of come across that I thought YOU all expected me to say certain things in the blog..or be happy go lucky.
Is any of this making sense? Hummm
Before I ramble on anymore...I will say this.
I know this is my blog and I can cry in it if I want to. I know I can come and vent and worry and share. I know that anyone who has judged me or would is not someone I should even concern myself with. But I think I am the one who is judging me. Maybe I should end this post with a question ....
Why are we harder on ourselves then we would ever be with others?

Thursday, January 1, 2009

Been Struggling...We Have A Deal , Right?

Our deal was....No Token Answers Just the Truth. I guess I need to learn that for my blog also, huh?
I LOVE my blog. It has been such a blessing for me. When I started my blog I wanted to have a place to just "talk" and "share" everyday goodies. In fact I sorta wanted a place separate from Philip's CB site. Just a easy going day to day blog. I even worried that no one would want to read it cause it would be boring.
Well as we know life has a way with us some days. I swear I think God laughs when we mortals make plans. He shows us daily that WE are NOT in charge. Okay God I get it. Really I do. Ha
When Philip started having such scary new issues with his left side I decided that there was really no way I could separate my life into two sections. I mean one part Philip's medical issues AKA the CB site and then my everyday odd and ends AKA my blog. Life is a mixture of the good and the bad and the happy and well the sad. So that is what my blog became. A blog about my Life. How ironic my blog name...I sure did not know the how true the title of my blog would become. I have always known Life is a blessing. But I now am trying to LIVE my LIFE....and remember that Life is such a Blessing.
Okay I know I am rambling...let me get back on track.
So as I said my original idea of my blog has not happened. My real FULL life is out here. And for me it is a blessing. I am not sure what it is for all of you. These past few days have been rough. I have found myself not wanting to or thinking I should post this or that cause I wanted to post some wonderful message. But I have not had it in me. In fact I could not even fake one.
Last night I wanted to come up with some well worded end of the year looking forward to this new year post. But in truth all I could do is cry.
So I guess what I am trying to say is..I know you all care and want to know what is going on. I guess I just wish I had some great news and some great attitude for my blog right now. I just feel like my blog could read like a pity party if I were to post . Yet I miss my blog.
I am trying to explain how I feel and the hard thing is I am not sure how I feel. So...maybe you guys can figure it out and let me know.
Until then...How about I work on a medical update post for later today. While it may not be all sweet and is reality...or should I say LIFE.