to my readers

This blog is now all about my personal life, including updates concerning Jerry's health. For quilt and pattern related posts please visit HillbillyQuiltShop.blogspot.com

Tuesday, August 26, 2014

And the verdict is in

I've not blogged in a couple of weeks because Jerry has just been going thru some tests and such and it was easier for me to just handle it all at once. Taking a look at each issue:

1) Chrons.
He had a colonoscopy and upper GI done last week. They found that his esophagus is getting infected again. He cannot take the Chrons meds because of his liver so they are actually treating it with blood pressure medication.
Sound odd? When your blood moves through the body, it actually uses pressure..and thus when you have a sore it throbs. If you reduce that pressure then that reduces the blood going to those sores and it calms them down so they (hopefully) will be less irritated. So that is what they are trying. He WILL have to have them go in and "tie off" the area before they start treating his liver. The sores are a problem child.
He also had a polyp in his colon. Biopsy showed no cancer but is the type that likes to turn into cancer (and he's had colon cancer before) so they will keep it monitored.

2) Hep C
He has to go through the treatments. A new medication comes out in October that they are waiting for and will start him on. He has to have these treatments because Hep C can transfer to a new liver. He is jaundice and weak so they are treating him with meds to keep the ammonia build up in check.

3) Liver transplant
When we last chatted this was just something way down the road if the treatments didnt work but things have changed. He will be getting a transplant. There is a chart, just like with any organ transplant. The chart goes up in the 40s or so (cant remember exact). He is currently at a 14 and it has been climbing steadily to that point for 2 years. Once it hits a 22 he will be admitted in the hospital immediately and given a new liver. Not really a waiting list..they will have him one within 48 hours after he hits "level 22" .

We have to attend classes and clinics to be ready for this.

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How is Jerry?
He is ok. Coming to terms. Hard to deal with all that is wrong with him and you know how you are sick and just want it to be over? I cant imagine what the feeling is like to know that you will never again not feel sick. Even if you live 20 more years you just won't feel good. (when you consider all the things wrong with him. )
He is turning in disability papers to get long term from work. We wont get the funds for that until it hits 90 days. He doesn't think about the financial end alot..leaves that to me. I think he just has to draw a line of what he can take.

How is Stephen?
VERY clingy to his daddy. He wont let him out of his site. He's taken to watching a whole lot more tv than I would like normally but if that is what he can do with his daddy then so be it. His current favorites are the old black and white Lone Ranger. He had a well child check up while Jerry was in the hospital a couple of weeks ago and Stephens doctor took the time to get a graph out and show Stephen a liver and point to where it is in his tummy. Stephen stays very interested in everything... even to the point yesterday while doing a quick little ER visit for lab tests Stephen insisted on seeing how the whole "pee in a cup and leave it in the little door" thing works. Jerry rolled his eyes but let Stephen come along and see. LOL!!!

How am I?
Not as emotionally wrung out as I was a couple of weeks ago. I still feel the weight of the world on my shoulders, but just knowing they are working on Jerry is such a HUGE load off. My biggest worry is money. How a family is supposed to survive with a very small income from fabric sales (August is and always has been the slowest month of the year by the way ), and still pay insurance premiums and meds and co pays..wow it is a lot to figure out. But if I know how to do anything its sell stuff. My stash and putting sales on in the shop are going to be what gets us by and God will take care of the rest.

You call could help! Spread the word!!

I sell ALL my fabric (including my awesome amount of destash stuff, new fabric etc) here :

https://www.facebook.com/groups/Ozarkfabric/

And all my patterns, notions and paper pieces here:

http://hillbillyquiltshop.com/

Wednesday, August 13, 2014

And now is when I get all human on myself...

Today.. we had to make a decision to keep Jerry home. Its not an easy one..I'll get to that in a minute.

First I will say that after arm twisting, Jerry has an appointment in two weeks at the liver center. They said "to be aware that we will be discussing all the treatment options". Not really sure what that means since we have already discussed the expensive one. But, of course, that statement wasn't necessary as we had no intention of leaving that appointment without discussing them. We consider the appointment a victory because yesterday morning the treatment center had said not to come in until mid October. After telling them that is not acceptible I guess they finally decided to read Jerry's charts from the hospital and bumped it up considerably.

We really like Jerry's KU team.. except the transplant (liver) treatment center. He's just a number for them. For example, his gastro doc's office was scheduling a post hospital evaluation before we left the parking garage when Jerry got released. This is typical of KU..except, um, the place that we need the most attention from at this time.

Anyway, that's that and we sit until the end of August.

SO.. Jerry can not work. Which leaves us in a bit of a pickle. He did go talk to his personnel dept today and it seems we can try for shared work leave next month. (too late for this month. sigh. ) He is not eligible for any disability for work until he misses 90 days.

So.. it seems we just squeeze by until.. ummm. (Here is where I am getting all HUMAN).. I have NO idea how we are going to get by. Now, of course, I will leave it up to God. I mean..I have no choice but to do that. Thank goodness because that is the best place to leave it. But.. I am a woman. And I like to worry. And even Jerry is concerned about a few things. Here are the concerns that have me a bit on the agitated side tonight which will cause me to pull away from work (the facebook always communicating part)  and pretty much want to be alone to come to terms with how to handle it. You will also hear my fussy come out in the following words because I am agitated (and human). I think after I post this I need to go hide. Since I always have a little bug attached to my side maybe he and I will go on a evening hike to get mom's worries and agitations all hiked away. Well anyway, here are the I have no ideas but it is what it is...

1) We have to pay insurance for Jerry out of pocket. With less income. Someone asked me if ObamaCare kicked in or came into play here. Nope. I applied for it (because it was the law) and I am exempt from paying for it because we are too low income. And that was before we lost Jerry's income. So, I will remain without any insurance and we will pay Jerry's, and God has that all figured out how because I sure don't.

2) Jerry has to pay child support for his two parently kidnapped kids. Most of you know the story, not going there right now for those that don't . There are some old blog posts around here somewhere if you dig hard enough. Point is..Jerry is concerned that he will go to prison for not paying the child support. I was in shock. I asked him, " How in the world can they put an old sick man in prison when he's too sick to work? "
His reply..they do it all the time. He works in a prison. He sees it all of the time.

3) We are considering me getting a part time job to make ends meet a wee bit more. I could work the weekends while Amy watches Stephen. I could also work a few hours in the mornings. I know most of you will say this is impossible with trying to juggle Ozark as well, but sometimes in the midst of strife we achieve the impossible thanks to strength that is not our own. I don't know. We will have to have a family meeting about this topic in the next couple of days.

In the meantime my teenager is driving me crazy because he does not seem to understand the concept of "leave me alone". You would think after all these years he would 'get it' when mom is stressing it is best to just give me space.
Ha! he is standing over my shoulder and will read this. Wave hi to him.

Ps I owe emails back to a couple of you. I tend to save the longer ones when I want to send a nice long reply until I have a moment alone to send a nice long reply. Coming soon, promise!!

Friday, August 8, 2014

Coming to terms, and how I deal with it. a.k.a. "Answers"

*this blog has become my personal blog. If you wish to read about fabric or quilting please find me at HillbillyQuiltShop.blogspot.com *

For many of you reading this, you have only just met me thanks to Ozark fabric or Ahhhhs. Yet for many of you, you knew me well before those two things existed. Before life revolved around Jerry's health.

The time line (bear with me..you need to read this even if you know..it explains things) :

Four years ago Jerry had a stroke. It was fairly large but a blessing in that the portion of the brain that it was contained in didn't affect his daily life other than he was slower to respond mentally than before and, as with any stroke patient, had some fussy issues that went away after time.

Two years ago Jerry was sick. Really sick. He was literally dying in front of my eyes and no one knew why. I begged that they find something. We took him to the ER 9 times over a three month period! He had a gall bladder removed for no reason. He had stroke after stroke. He had internal bleeding. The doctor gave me not much hope..oh look..another stroke. Then, in one day, it all was figured out. Took 3 months..but it was figured out. 

Not over night, but soon all was o.k. Not perfect, but o.k.

       Most of you remember this. Most of you are tired of hearing of it. But ... can you imagine being me and living that.. having it finally behind you and just two short years later..living it all over again?! 

The strain of the last two years has nearly broken the hillbilly (me). I said nearly. Without Christ..I think it would have. Because I've been on the brink a few times and then had to remind myself where to put my faith.

The last three months have been the largest test. I have been a wreck of emotions. The repeat of unknowns again. The watching my husband deteriorate. Again. The having no one listen. Again. Going to ER rooms and doctor offices and coming home empty handed. Again. I thank the Lord that Jerry hasn't had strokes this time. I think that would have been my final straw. I think I just could not have handled that.

But I will say my wreck of emotions has been more fragile than it was two years ago. I attribute that to a few things.
1) Facing it. Again. (have I said... Again?)
2) Spending more time with work and less time with God. I need to fix this. God has to help me. I see the $$ and the bills and the loss of pay with each missed work day.
3)Hormones. I am 45. With a 4 year old kid. And tired. Where's that chocolate bar?

But today...as of just a few hours ago.. I feel FREE. I do, seriously! Did we get some great news about Jerry? Nope. In fact, we were both in tears this morning. But we got news. That is what I needed. NEWS. They found it. I can take all that worry from the last three months and just place it in someone elses hands. Now I don't mean spiritually here. I have always placed things in God's hands. But I still had to do the work of making my stubborn husband and the equally frustrating health care system LISTEN to me. Now that I don't have to prove anything, do you realize what a load of burden that is off my shoulders? I think my husband didn't know how to take my feeling of happiness this evening.

Why? well, his prognosis isn't great. Not grim. But not great. It's that liver. Only it's not just the Hep C as we thought. He also has cirrhosis of the liver...caused from a combo of the hep c, the chrons drugs that attack the liver, and his severe diabetes. This morning one doctor said he will eventually need a transplant.

Now I ask you... how would you take that? Remember..this is a man that likes to have multiple strokes when off blood thinners. This is a man with so many other diseases attacking his body. This is a man that has already been through so much. Is it worth it? Would he even want to try? We. Just. Didn't. Know. It was a tough morning.

But then this afternoon Mr. Liver doc man walked in and told us that they are going to continue with the plan of trying to get approved for Hep C treatments and these treatments can actually help the cirrhosis . His prognosis isn't as good as it was just last week. He might still need a transplant someday. But no one knows. And no one will know until we see how Jerry responds to treatments.

Now: the SCARY part (s):
1) Jerry's health has declined even this week while in the hospital; his eyes being the tell tale sign. They've gone from being a very mild yellow at times that only his wife noticed to being a nice yellow color that is obvious. In 4 days. That is scary.
2) The treatment originally had a two month waiting list. Will he get bumped up? How much will he decline during this wait? How much more can his body take?
3) He has to work. This pill is $1000 a day for 12 weeks. He needs that insurance. Has to happen.
4) The insurance company still has to approve it.
5) It might not work. Jerry has a LOT going on inside that body of his...
6) What about Chrons? If his chrons meds attack his liver..well, what then?

These things we cannot know. But this I do know. I don't have to fret over them. They are out of my control completely now. I can raise them up to One that knows best. We can live, and breathe and watch and wait. Be patient and see how God works through it.

Of course, with all that has happened over the last four years, Jerry and I have talked about the what ifs. Me more than him. I told him tonight that we know he won't live forever. I mean.. if he lives to Stephen's adult hood that will be a Miracle for all to behold! But Jerry has been given a gift that many men do not get. He has the ability to plan and settle things for his family. And if he pulls through the next 15 years... Wonderful! If he doesn't..then we are not caught off guard.

We have put a stop on our attempted purchase of the house around the corner. The deal was almost in our hand! We almost had a real live home with a real live yard for Stephen to play in and a real live warehouse for the business. But I am calling the banker tomorrow and telling him that, nope, it's not meant to be. We need to just see how this plays out. We need to wait... and watch..
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Monday when Jerry went into the hospital, when I picked Stephen up from his sister's house, I sat him on my lap and told him that his daddy was in the hospital. Stephen, bless his sweet spirit, laid his head on my shoulder with a couple of very quiet sobs and said, "my daddy would be sick forever." I did not promise him otherwise. I just comforted.

Tonight Stephen had a meltdown when leaving the hospital. He just could not get over leaving his daddy there. So, I had to sit him on my lap and say, "Stephen... your daddy WILL be sick forever. But also, Stephen, God created you very very special. He made you STRONG. You have a daddy that needs you to care for him. Other little boys don't have to care for their sick daddies but you do. And that means God trusts you to do that. Its a big job but He knew you could handle it so that is why God gave you your daddy that needs extra special care."

Stephen is whimpering in his sleep. It breaks my heart. Rest easier my son. I am bringing your daddy home to you tomorrow. Yellow eyes and all. We will wait this out..together.

Wednesday, August 6, 2014

Feels like home!

** REMEMBER this is now my PERSONAL blog. Quilt and website stuff can be found over at
HillbillyQuiltShop.blogspot.com **

Guess what? Monday we decided to make things like old times and visit Libery Hospital. The ER is so nice there. It's like Jerry is flagged in the computer or something because they just always scoot him right past triage and into a room, with a mound of people hooking him up to machines and such before you can blink. The doctor agreed with what I had been wanting for two months...Jerry needs to be in the hospital. What he didn't agree with..is the whole Liberty Hospital thing. They scooted him out the door, and transported him to KU. figures.

Now don't get me wrong, with the exception of the ER I like KU. Well I dont like paying for parking everyday. And the gas to get there. And the drive through downtown Kansas City. But it is what it is.

Jerry will be in the hospital most of the week I think. Initial findings are that for sure his liver is causing issues but that is not the problem in its entirety. Now they are trying to find just what that problem is. Because he is weak and because they know his liver is causing some problems it sounds like they might cancel the biopsy. It's an unnecessary risk when they already know it has issues. If they cancel he can get back on blood thinners which will reduce stress on his bride. Sounds like a plan.

Today the cardiology team is being called in to see if they can find the problem. He'll have his arteries and such checked.

I am taking a certain little boy to see his daddy today. Something sad happened in Stephen's life yesterday. He started pronouncing "th" as opposed to "f" in place of "th". Sigh. My baby is growing up. I liked "Darf Vader" and other such cuteisms.

Speaking of a cute little boy, he has woken up. Not really a good thing as I was supposed to get shipping done this morning. I didn't stay up last night like I should have. Kicking myself the minute I heard little pitter patters above me.

I'll update the next time I know anything.