NEVER GIVE UP

I'm tired today.

I've had it with Retroperitoneal Fibrosis.

I'm ready for it to pack up and get out of here.

When I was first diagnosed I didn't feel bad.

I wouldn't have really know anything was wrong.

Once I started getting treatment everything changed.

I know that's common with several different types of illness's and treatments.

There is a group of people who have this disease and they have a page you can follow.

They all tell about what they are experiencing.

I don't like the page.

I looked at it and everyone went on and on.

It seemed like a down place to me and besides that I wasn't having any of the things they were complaining about.

Several of them talked of pain.

They talked about having a hard time coming off the medications.

Well now I know.

Now I could post on that page.

I have gone from no pain to pain.

I have gone from a high dose to a low does and it's hard to adjust to.


I swell like crazy.

My eyes bother me.

I cry over every single thing.

I can't take a shower unless someone tapes my back up first and then they have to still be around to untape me.

I have to have my bandages changed every night.

I have to have my tube flushed.

I have to wear certain kind of clothes.

Ii have to empty my bag.

Today I wanted to cry.

I wanted to give up and have a pity party out on the porch.

I was ready to go out there and carry on but the neighbors are getting things ready to combine in the field across from the house so I stayed inside lest I cause a scene.

I wanted to complain.

So I decided to tell you all

I mean surely you will feel sorry for me.

Surely you will understand you will have my back.

But then something happened.

Its the same thing that always happens.

I realized I was so thankful I  didn't have cancer, yes this disease is life threatening but it's not cancer.

I thought about while I do feel bad because of the meds it's not like I'm on chemo.

I'm not losing my hair.. as a matter of fact my meds make my face more hairier than ever.

While I ache all over I can take tylenol.

I can use a heat pad.

I can get up and try to walk it off.

When I'm sick to my stomach I can sit down or lie down.

I can put a cold rag on my neck.

I don't have to call in sick to work or worry about losing my job.

While I do have to have my back taped up I have someone here to do it.

Someone here to untape it and change my bandage and flush my tube.

What if I was alone?

Many are.

I worry about the bills but we have insurance.

I worry about Mark and the stress it is on him, I see it in his face but then the kids come and help him out or cheer him up and it's okay. They even offer to pay bills. Of course we aren't in that kind of shape but it's so sweet of them to offer to share the burden.

I feel bad when I hear the kids have been upset but never tell me but then I'm thankful for all of you who come along beside them and comfort them and encourage them to keep on keepin on.

One thing we found out from the page is most everyone is sick early early in the morning into the later morning and then it passes.

That's the case with me most of the time.

Mornings are rough but I feel better later in the day and I'm glad about that.

Everytime I go to see a doctor they tell me I'm different, I'm hard to figure out.

They just plain and simple don't know what to do.

When I had my biopsy Mark and the kids were of course in the waiting room. 

They saw different surgeons come out and talk to families in the waiting room.

Finally it was time to hear from my doctor.

But he didn't come out.

Mark and the kids were called into a conference room.

Many of you have experienced that.

You know the fear and the sinking feeling that comes with it.

It must be bad news.

You begin to cry.

He had some good news.  he was 90 percent sure it wasn't cancer.

The bad news was it was retroperitoneal fibrosis and it was every  where.

It was bad and they had no idea what to do with it or how to stop it.

So they told me it would be a trial and error type thing we would start a treatment and see what happened.

The good news is after the second mri they said it had not changed which means it had not grown.

Give God the glory.

Sill though they didn't know what to do and I couldn't stay on this medication and we had to try to fix the damage the fibrosis had already caused.

Thankfully I have children.

They searched out a doctor.

A man who not only specializes in Retroperitoneal Fibrosis but he is also a kidney doctor which is exactly what I need.

So to sum it up...sitting down here and getting ready to cry to all of you has helped me see it how it really is.

I don't need to cry around.

I don't need to feel discouraged.

I have so many good things going on.

Satan tried to deliver a punch but God stepped in and said I'm take over from here.

I'm not sad anymore.

Oh I'm crying as I type but they are happy tears.

Tears of thanksgiving and humbleness at how good God is to me.

If your day feels like a bummer, and we all have days like that try to rethink it.

When you think of all that's wrong stop and think about what all you have that makes it better or not so bad.

Decide to live in victory and in healing.

It's a wonderful way to live.