Living In Grace

A Quick Update, of sorts

First of all, a huge THANK YOU to everyone who sent birthday wishes yesterday! What a treat to get home from hemo and find all of those :)

Things here have been slow.

I'm still acclimating to the hemo schedule and treatments, which have left me rather worn out and napping alot. The nurses say I am doing really well, but I'm still waiting for the "great feelings" everyone is promising!

Jonathan has been home all week with a nasty respiratory virus, which he lovingly shared with me for my birthday, and Kati just for the heck of it. Fevers, hacking coughs and all. What a giver....  If John goes down with it. we're in the soup, cause he is the cog that keeps this place moving, and does all the driving. Please keep him in your prayers, if you think about it. Thank you!

Unfortunately, Jonathan missed all his finals this week, but his teachers have all agreed to let him finish up next week when he is better. Thank goodness.

Otherwise, we are just getting through the days, one minute at a time.

I'd love to know what all of you have been up to. I fear I have fallen behind in reading up, so please leave me some news!!!

Blessed

 Hi.

My name is Kelli.

And I am the mother of two teenagers.

(Hi Kelli)

Let me tell you a story ...

I have a 16yo daughter.

She is not your typical 16yo. She has the maturity, at times, of someone much older. This is because of all the stuff she has been put through in the last few years.

Yes, there are times I have wanted to wring her neck, but this is not the story of one of those times.

Because I have a hemo permcath located under my right collarbone, I can no longer shower. And the fun part? Because of the PD Cath in my abdomen, I can not take baths ... Water can be a huge source of infection, so I am now having to manage showering without getting my shoulder wet, and trying to wash my hair (which is halfway down my back) in the sink.

Hooray!

So, last night I managed to get the shower thing figured out but still had to wash my hair. Boy, did I need to wash my hair ...

I asked Kati to give me a hand, and she suggested we try it in the standing shower we have. It has a hand held shower head. At her suggestion I used my walker as a shampoo chair, leaning back over the shower floor. She washed and conditioned my hair, then asked if she could brush it and style it.

We spent a good hour or more doing that. And talking. We talked about her new boyfriend, school and some other things.

We talked.

It's a wonderful thing to have those moments of clarity with your 16yo daughter. Those moments are fe and far between it seems.

But, I'm hopeful that now at least three times a week we will have those moments. And that they may lead to other moments.

Maybe this hemo things will be helpful in more ways than I expected.

I think it may be worth the journey now....

Good Days, Good Days

Things around here are getting rather interesting .... and it has little to do with me, thank goodness.

The first hemo treatment went well, with only a few issues, but I hope to get used to it in the next two weeks. I do foresee lots of naps in my future.

In much more interesting developments ....

(Deep, deep breath ... and ....)

Kati has her first boyfriend.

We'll refer to him as Jeff. Jeff and Kati went to see Bedtime Stories at the theatre two weeks ago, with parents doing all the picking up and delivering to the theater. He was nice enough to open her door wen we picked her up after, and seemed like a nice kid.

Date two was at the Winter Formal the following weekend. They each went separately, but then hung out together at the dance. +
+
And so romance began ....

It was so cute, she was moody and distracted all weekend, and we knew something was up. After dinner Monday night we sat at the dinner table, after sending Jonathan away, to find out what was wrong. Of course, in our minds we thought the worst.

She was soooo nervous, but finally told us the truth. They were going out together.

Whew!

You could feel the sighs of relief from her dad and I.

She spent the next hour or so telling us all about him, them and all manner of other things. Young love is so refreshing and new!

Since then, it's been Jeff this and Jeff that. But she is back to being our dear sweet Kati again, so thank goodness for that. It's so cute to watch, and to remember all those first feelings of love and all that goes with it.

It will be interesting to be "the parents" in this relationship. It's a first for us, so we're taking it one careful step at a time.

Any advice from other "parents" out there? Even those of you whose parents did the right or the wrong thing .... tell me your stories.

We could really use any help~

Checking In

Holla peeps!

I'm home, and ready for bed.

Before I do that, I wanted to update y'all on how things went, and thank you all for your emails and comments....

We crawled into the hospital abit before 8am this morning, when it was a balmy 18 degrees. I let John leave me at the front door while he parked, cause I'm honest enough to say I'm a wimp when it comes to the cold.

Pre-admissions and prep took another hour and a half, and we went into surgery.

I was awake for the procedure, which caused an initial panic attack in the prep area, but good drugs worked miracles on that. May I also give kudos to the pre-admissions nurses who had to deal with me through said panic attack.

And I'm sorry.

They got me ready for the procedure by strapping me like a crucifix on the table. I was effectively drugged into la-la land, and nocaresviille. Sweet stuff, I have to say.

I vaguely remember a few things, and then nothing til a couple hours late. By then, I was hooked up to the hemodiaylsis machine in the ICU and feeling no pain.

I spent almost three hours in the hemo unit before I could go home.

The catheter is below my left right shoulder blade (drugs are still talking) and really uncomfortable tonight, but I suspect that will go away in the next few days.

I'll be doing hemo now "in center" for3 months, on Tuesday, Thursday and Saturday afternoons. But, that leaves me 4 good days with NOTHING!

No hookups, no overnights, just pure freedom.

I may enjoy this.

Thank you all again. I have absolutely no words to convey what all of you mean to me.

Just know we are blessed .

Off to bed and sleep!

Journaling: Post 4 - 24 hours and rambling

I've spent the last 24 hours or so with the family.

We talked out the details with the kids over dinner, and they seem on the surface unconcerned. I believe they are just used to these things now. I don't know. So much is going on with them in their own lives, good and bad, that I think this is the "constant" they just count on.

Parenting is hard.

Parenting teenagers is harder.

Parenting teenagers while going though this kind of stuff is the hardest, I think.

After dinner, John announced he had gotten the jacuzzi setup in the back room, so we went and sat in their with the kids for a while. I can only sit on the side and dangle my legs in, because of the catheter, but oh let me tell you it felt really, really good.

My husband is the best!

Today has been a restful one for me. I've slept most of it away. I think it's my way of coping, but I haven't been sleeping at night, so it helped alot.

I've done pre-admissions with the hospital, s we are all set on that front. We arrive at 8am, and I hope to be home by dinner. I will have my first hemo treatment before I come home. If all goes well, then I start hemo Thursday, Saturday, and Tuesdays. Each session will be 4 hours.

Things I hope to get out of this:

• Better balance
• Walk without stiffness, or the need for a walker
• Sleep at night
• Regain the feeling in my fingertips
• Regain the ability to drive, and do my own errands
• Go Grocery shopping - ALONE.
• Better health overall

Short list, but hugely important to me.

So, with that I bid you all adieu until after this whole shebang is over.

Thank you for your words of encouragement, scriptures, emails and love. You have buoyed me up against all the junk and have helped me get ready for things is ways I could not have managed alone.

Thank you. Thank you. Thank you.

Journaling: Post 3 - Surgical Update

I had talked with the doctor last week, and he had posed some short term and long term options, and I truly needed time to think on things. John and I had some extensive talks as well,. and made the decision to meet with the doctor again together to get things settled.

I've talked long and hard about the fact that I'm totally resistant to the idea of going on hemodialysis. The long term benefits of being on peritoneal dialysis are well documented.

But, the time has come.

It appears that I'm not able to get my toxin levels down to a manageable level through PD, and it's one of the largest contributing factors in my neuropathy. And that is the largest contributing factor to my inability to walk, feel things with my hands, etc.

The plan now is to insert a permcath in my chest, which will allow an immediate start to the hemodialysis process. We will continue on hemo, three times a week, 4 hours a day for three months. Hopefully this will get my toxin levels down to a manageable level that can be then maintained through peritoneal dialysis again.

There is a huge amount of fear on my part in getting this catheter. It's implanted near the heart and that just honestly freaks me out to no end.

So, we have scheduled surgery for this Wednesday morning at 8amPT. I will have a hemo session afterward, and hopefully then come home. I am hoping that I don't have the low blood pressure issues I had the last time.

We start hemo regularly on Tuesday, Thursday and Saturdays for the time being..

Unfortunately, this puts more strain on John , who will have to drive me to and then pick me up 3.5 hours later, three times a week. I hate to see this, as he has so much to do already.

I am hoping that this doesn't leave me exhausted. My fear with hemo has been that every person I see come out of the hemo unit, does so in a wheelchair. I don't want to end up in a wheelchair.

I know in my heart this is the right decision form me right now, but my head is throwing the fear factor into play making it much harder.

But, that is where we are at right now.

If you could be praying for John and the kids through this, I would really appreciate it.

Journaling - Post 2

Dying.

Not a normal subject to talk about over the dinner table. But. it came up at ours.

Kati, my sweet 16yo daughter, looked me in the eye and said thee words, "You may not think you are dying, but you are. And you need to accept that if you are going to fight this thing."

It stopped me in my tracks.

I stammered out a response, trying to find the words to tell her how wrong she was, but I couldn't.

She was dead on right.

I am dying.

This disease will kill me.

There. I've written it. It's in stone now. Something I can't take back.

I had to look my daughter in the eye, and tell her she was right. And I hated every word that came out of my mouth.

Those are words I have refused to acknowledge for the last three years, out loud, for fear that admitting it would mean it was true.

It was quiet at the table after that for a few minutes. I think it had to sink in for all of us.

In that moment, I realized that I could be depressed and not do what needed to be done to fight this thing invading my body, or I could fight for my family and for me.

Am I still angry? You bet. I'm still  really, really angry.

But, I need to turn that anger into something more productive.

Honestly, I don't know how to turn this depression around.

But, tomorrow we will take some steps to turning the tide on the downhill spiral that is my life.

I'm scared to death, and trying to pull my heels out of the dirt on alot of things I don't want to do.

We'll see what tomorrow brings.

And what decisions are made.

Updates

Tomorrow we will be trying to get in with the doctor to make some decisions regarding this upcoming week, and treatment changes.

Thank you for your continued support in prayer.

Major Decisions

John and I are making some serious life decisions today regarding my treatment. If you could keep us in your thoughts and prayers this weekend, it would be appreciated.

More to come once we settle on some things ....

Journaling- Post 1

Wow.

That's all I can say.  You guys really know how to show support. I was awed and amazed by your words of encouragement. Thank you for "being real" and sharing some of your own personal struggles.

It's funny how you think you are so alone, and others come to you and show you that you aren't. That we all share some of the same struggles. I know this is my heart. but man, my head just wants to make me think I'm alone.

Something i am struggling with right now is the impact this disease has on my family  The guilt associated with the inability to do certain things is overwhelming to me right now. And with that, comes a lack of purpose.

My lack of ability, in my mind, to contribute to the family has made me more stressed and angry. There are things I am not able to do, like push a vacuum or wash the dishes- and I can't do those things. It makes me feel useless, and I hate that feeling.

Feeling useless is the most frustrating thing to me in the world. I have always been the one to lead, to get things done, to be in charge. I motivated people, and I have no one to lead or motivate now. My kids love me, but sometimes I feel lie they wish their mom was healthy and normal.

No one wants the mom that uses a walk to go to parent teacher conferences.

Especially in high school..

And as their mom, I loathe to embarrass them. I feel unable to do certain things with or for them because of some of my disabilities.

That makes me angry.

The fact the my husband has to drive everywhere, and take time out of his day to help me makes me angry.

Being reliant on others for things I should be able to do myself as a 44 year old, makes me angry.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~`

God,

I'm in this, and it's not going to change. I need to not be so angry about all this. I get the situation, but I hate the impact it's having on me and those around me.

It's not fair, and I want it to all just go away.

Knowing that won't happen, I need you to help me find a way past all this anger. Past the feelings of "why am I here". I feel no sense of purpose right now, and that is getting to me.

Help me see my purpose.

I need direction again.

I'm lost.