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, November 3, 2015

Grab some coffee, it's catch up time

Since it's been so crazy long since I've written, this might take a bit. But I know you have all the time in the world and are sitting on the edge of your seat just waiting to read all about Owensville, so here's the latest edition. 

Before I begin, let me remind everyone that quilt related posts happen over at Hillbilly Quilt Shop. Blogspot. Com. And let me also tell you that I downloaded the blogger app on iPad today to write this because blogger on browser via the iPad was glitchy and I lost my work twice. I've been working on this post for two hours. But this app is horrible! Still if it lets me get thru this post finally, I'll take it. I don't really care to turn on lights and get to my computer at 3:30 in the morning. Even though doors are shut, Stephen still wakes up as easily as I do and that light suddenly shining under the door wakes him every single time. So I'm sitting in the dark writing this from bed! And have been for two hours. Good grief. Here we go again...please let the third time be the charm! 

Is that coffee ready yet? 

JERRY is still doing quite well for Jerry. He had a recent check up at KU and his Hep c is gone. While he still has cirrhosis of the liver, there fore the liver can't last forever, it is holding its own. He still has days where he sleeps for 24 hours straight but they aren't as frequent as before. He is very unsteady to walk, but I tease him that he's a much better Suzy homemaker than I ever was. His Chrons remains in active and his diabetes probably is his biggest battle at the moment. He struggles with more neuropathy and they are trying to find something to help. Since he has liver disease, and due to his strokes, they are limited on what drugs they can try. But over all, he's doing ok. 

AMY is still engaged and is working lots of mandatory overtime at Hallmark. She's been working 12 hours a day Monday thru Friday and 8 hours a day on Saturdays and Sundays. They actually let her have this last weekend off so she spent a lot of time with Stephen and I. She will be 26 come spring so I think she plans on marrying by then and starting her family before she gets much older. 

SETH will be 18 in a couple of weeks and he's never home! Not much more than that to share about him. He lives with his dad pretty much full time now. I go to bed at 7:30 in the evening and he's for sure never home by then so he just comes around and visits at times. 

STEPHEN remains our sunshine. He's so different now that we've moved. He's all boy and acts like a real child now instead of a mini adult. He hates..with a firm passion... TV or movies or car travel. Don't even try to drag him to the theatre.  He is the neighborhood social butterfly, playing outside sun up to sundown as long as there is someone around. He still can't entertain himself at all and turns on the whine when his friends can't come out to play. He woke up at six this morning ( thanks time change). So I had to put this blog down and play hide and seek and sword fights for an hour while waiting on the alarm to go off. He's thriving in school. He shocked Amy this weekend by drawing her a picture and writing the word ' volcano' at the top of his page. He's just five, but I think he will be reading soon. He sounds out words really well. He says he doesn't like math because it's too much work. He loves his pets and shares the dog with me, and he also has four gerbils and one goldfish. One large goldfish that is getting a new tank for Christmas. Well really he has nine gerbils but we keep the five girls at Amy's house and the four boys at my house. We hope anyway. Gerbil anyone? 

And then there is Ms HILLBILLY. 

Oy where do I begin? The financial stressors were getting to much for me to take so I went and got a job. I was hired as a tour guide at a pumpkin patch and fun farm. There's tons there for kids to do, including lots of baby animals, corn mazes and hay rides. That's just the beginning. I worked hard to prove myself a good worker, so within a couple of weeks of starting the job I was working 6-7 days a week, doing all kinds of tasks. The hours were Long and tiring but I knew it was short lived so I was thankful for them. That job ended Sunday but it actually led to another job that starts for me tomorrow. I'll be working at a bakery. I need to wake up at 3 a.m. But I'll work ten hour days so I get three days off a week and I'll be home every single evening with Stephen. I just go to bed when he does, and with the time change that's 7:30 p.m which is perfect. 

I'm not giving up on my quilt shop goals and dreams. I'll blog about them over on the other blog as soon as I get this blog posted. 

Physically I'm ok. I have to cancel a certain female surgery because  if I take a month off work then we will lose our home and car. But I'm meeting the surgeon on Friday and we will discuss alternatives. My feet are surviving. They hate Plantar's fasciitis but I try my best to ignore it. I refuse pain meds, and I think the more I move it helps them anyway. For the last six weeks I really cut down my eating and I'm pretty sure I didn't lose a pound. Pfft. Whatever. I'm tired but not bad. Like today...I'm supposed to be reporting in to Facebook right now after taking two days off, but it's quiet here at home. Stephen just go on the bus, Jerry is asleep, the dog is out on her chain for a bit. I am basking in the quiet. I'll write a blog post on the other blog then consider taking myself off my little mini vacation. It was two days off, but let me tell ya, this third day might happen too. We will see. I love my Facebook groups but I'm thinking I could really love being lazy for while today ..for the first time in I don't even know when! I want to sew kitchen curtains and they might just call my name first. 

Well you've probably had three cups of coffee by now. Time for me to go post on the other blog, which I'm excited to do as we planned out my next brick and mortar shop this weekend! 

Sunday, July 26, 2015

No news is good news, new news is great news!

Jerry has been doing so well lately that I've just gone about my business enjoying being able to go about business. He did look awful last night, not sure why. I think he intends to sleep the day away today.

I've been going through my own share of doctor appointments catching up from years of not having insurance. I have found out mostly very good news. Other than my weight which I really struggle controlling even with a pretty much ok diet (my doc says its stress and menopause) , and some bone/ muscle issues and female issues all is good. Nothing big or major wrong at all and blood work looks great!

Now on to the blog post I hinted at on Facebook that people are itching to hear about:

THE HILLBILLY FAMILY IS MOVING TO A NEW HILLBILLY HOMESTEAD!!!!!!!!!!

It is just a double wide..but, hey, I have to keep with the Hillbilly theme, you know? It's on a quiet street in a super quiet little tiny town. The town has no shops, a few churches and a school. That's it. Can we say, PERFECT??

The house has a ramp already built so that Mr. no longer has to worry about stairs. The yard is very small, which at first I didn't like but then realized that when we move we give up having our landlord do the yard work..so I decided I will happily take tiny. My business will need a dumpster location and that might be a problem but I'll go work it out somehow.



The garage is oversized and already set up for a man's construction cave. Jerry likes to piddle around in the garage so he is thrilled with this! 



With him taking that over, we had to figure out what to do with my warehouse and business. The house has an entry area that we feel could be used as a nice sitting/reading/ music room:




And since we can use that for a little living room, we decided the large area could become my warehouse, at least for now until we figure something else out:




If you could see the warehouse, you would know this just isn't quite enough space, so we also decided to let it overflow into the Master bedroom; I'll put my desk and sewing stuff in there. I also don't sleep with Jerry...he needs his own "sick bay" space so I'll put my sleeping couch in there.
Here is where the Master is off that living area above:



And so now I will get my very own space complete with a garden tub!




Those of you that know me well, know that our current home is UGLY and I haven't decorated because I have just wanted to move away from this place.
Well just look at the new kitchen that I am thrilled with:




We really do not have enough stuff to fill all those cabinets so maybe I can stuff them with fabric??

Mr. Stephen picked out his bedroom right off the bat. He wanted the smallest room, which works out good. We will probably have to use a floor mattress for Seth when he's around and they will have to share this room, but Seth isn't around too much anymore and doesn't keep too many belongings with us so that shouldn't be a problem. He just keeps his stuff in his car for going back and forth to his dad's house. Or sisters house, or friends house. LOL I give him the freedom to go whereever he wants so that pretty much means he's not at home, so it will be ok they share this room:




Jerry is the one that will have to deal with downsizing to a smaller living place for himself. He's used to the master bedroom all to himself. And the master bathroom all to himself. This will be a big change for him and not sure how he's going to manage, but, if he's going to take over the workshop then he has to give elsewhere, so he gets this room:



And this is the bathroom the male folk all have to share while I just enjoy having a bathroom where NO MEN shall go. Unless they are guests. Then I guess I'll allow. Maybe I'll stick a men's sign on this and a ladies sign on mine? *grin*




This new home will be a downsize in space with a upsize in rent adjustment for our family but we can do it. Most importantly we will no longer have neighbors on the other side of our walls, so we can make noise whenever we want and I don't have to hear them vaccuum at midnight anymore, which is their habit. Or smell their cooking all of the time.
We will no longer have to deal with the issues of this home: Walls that are yellow with years of smoking tenants. A bathroom light that will not come on unless its 50 or below (seriously!) . Wiring that is ancient and fuses that blow constantly.


Our new home will be rent to own and our new landlord seems very nice. Well she must be because she is working really nicely with us about the deposits we just cannot swing. She is going to give us extra time to move in, giving us the keys early so that we can move a bit at a time. And she doesn't mind our dog. Ginger is happy about that.



The home is in the total opposite direction we wanted to move but the doors to it just kept opening so we knew it was 'right'. I cannot help but think that I am supposed to stay in this area to open my shop again someday. Any quilt shop near MSQC is going to do well and MSQC is always super supportive of me. So who knows?

Our next step as a family is to "embrace" the change. We will be church hunting and boy activity hunting.
After I soak in that garden tub.
I'm all about priorities. 





Saturday, May 16, 2015

A day with Stephen

I know you all haven't had a Jerry update in some time, and while there is always plenty of newsworthy things to post about Jerry, I'm not going to. Today is Stephen's day. 

OH WAIT back up! There are a couple of you that have commented that I cannot reply to and they were such nice comments. I really read every single one of them. I have this HORRID habit I've gotten into that I save all my nice emails and blog comments until I have down time to really reply..not like a quick two second response like facebook messages are. But then I save them and never get to them! What has happened to me? That NEVER happened before Jerry got sick, so if you have waited a reply to your super sweet comments I am so so sorry. I've just waited to reply when I can send a nice, well thought out note and..well..hum.... ya. You get it. Thanks though. Some of you sent them on especially challenging days and I really needed your kind words so very much. 

But enough about me and enough about my husband. This time I want to discuss Stephen. 
What would I do without this little ornery angel? 



He IS my sunshine day in and day out.
Yesterday was a particulary hard day on the home front and my job as well.
This morning I woke (after only 2 hours sleep) to more job stress.

I headed to the city this morning to drop Stephen off at his sisters as normal for the weekend so that I could work. But something came up suddenly and she couldn't watch him for me. Which left us already in the city. I didn't want to make the boy ride in the car all the way back home without doing SOMETHING.

So we drove even further, and further.
I was driving far from my facebook job problems really. Best drive I've had in a long time.
We ended up going back to my stomping grounds.

I took Stephen to the music store where I knew the owners. He got to sit down and try a real piano.
He needs one. At least a professional keyboard. Someday.
The store owner sat down with him and spent time showing him how a piano works. What the foot pedals do. She told me he has talent and he's such a gentleman.
My heart swelled.



Then we went to my favorite ever garden nursery. I've never seen another quite like it since moving away. Stephen loves things of beauty and we walked around exploring the many various trees, flowers and fruit. Then he found the rocks. All different kinds of rocks. He wanted some badly but I told them we would have to buy huge bag fulls, that they don't sell them one rock at a time. But I did tell him they wouldn't mind if he could pick out one to keep.
He refused. Said its stealing. But Stephen, instead, on his own, went up to the cash register and asked the man if he could have two little rocks.
The man looked at me in surprise, gave Stephen a sack and told him to go pick out as many as he wants for free for being such an honest little boy.
Stephen only picked a handful. He said it wouldn't be nice to take too many for free.
In the car, you all just would not have believed it.
You would have thought those rocks were clumps of gold. He just kept going on and on about how he loved them, how this was the best day EVER and how he sure was "proud" of that man letting him do that.
The minute he got home he took his three FAVORITE ones and gave them away.
One to me, one to Jerry and one to Seth.



After the garden nursery, I took him to a florist. He loves flowers so and I wanted to just show him around. He actually got angry..that no one helped him buy me flowers for Mothers Day.
So, I went out to the car and got his little bit of money, added a few dollars to it and talked to the owner. I explained how his daddy was really too ill to drive him to a florist or to go to the woods to pick me Mother's Day Flowers.
Wow, that lady was so amazing with Stephen. She took him downstairs to their large cooler and let him pick out three carnations. Then she helped him make a little arrangement with them, wrap them and tie them with a blue ribbon he picked out. Then she took him over to the register and helped him ring them up, I am sure charging him way less than she should have. I was to stay hidden during the entire process. It was a "surprise".
Once he handed them to me I couldn't help it.
All the stress of this week (its been a big one), the only two hours of sleep I had gotten the night before, the incredible sweetness of my boy, the kindness of the lady...
those floodgates opened.
Then Stephen cried because he said he knew I was crying because I was so happy to get flowers from him and he was so happy he could do that for me.
Then the lady cried.
She said he is the sweetest child she has ever seen. I tend to agree.




After a stop at the park we came home and Stephen told his daddy all about his best day EVER.
I am so glad I took the day away with Stephen today.
I wish he would stop growing up.
I'm going to make sure we get lots of days like this.
Just me and my boy.
(His daddy or siblings can come too sometimes.)


Stephen has asked to please begin blogging again. From now on BY him instead of me authoring it.
We will maybe work on one tomorrow.
There is a link to his blog on the side bar.
It's a very neglected blog but it sounds like we are going to change that so please consider following it. I know he would love comments on his posts.



Wednesday, April 8, 2015

He is a super hero!

**This blog has become a journal concerning my husband's health. My quilt blog is now moved to HillbillyQuiltShop.blogspot.com). **

I've said before that my husband is a super hero, but he had a recent doctor actually call him that. Since it was his favorite doctor, that was a plus and he needed the smile. If you are just coming to the blog, you need to read back several posts as I am not going to get into what all is wrong with Jerry. I am just going to list the new stuff. I really had no idea that one person could have so many different things wrong with them and still function. Here are the newest changes:

Esophageal Varices:
This is the latest life threatening obstacle that Jerry is facing. Last Tuesday they went in and banded four varices. The doctor said that 2 of the 4 were very dangerous and about to blow. He has to repeat the process every 4 weeks or so for now. They actually run a sonogram down his throat and then band while in there. He is of course knocked out during, but for the next few days afterwards he really struggled with eating.

Varices is life threatening to anyone but to Jerry it is even more so. His blood has antibodies from so many blood transfusions. If one decides to blow it might be impossible to get him blood in time, as his blood takes about 24 hours for the lab to 'work up'. So, these must be monitored closely.

Bone Marrow Failure:
Jerry's bone marrow is on strike. Really, it is! It has been having issues for awhile, leaving him anemic for a couple of years, getting worse about a year ago, then in January the marrow went on complete strike! Last Thursday, we saw a specialist concerning this, and it was really interesting to see the graphs showing the January dive. Jerry's body cannot make blood on his own right now. At all. So every week to ten days he gets a transfusion. The rest of the time he remains very anemic. The doc's try to keep his hemoglobin levels at 7.2 or above. (Normal is 12-14). I have seen him pale and yellow for so long, I don't know what his normal skin tone is anymore!

The cause for his bone marrow failure is medication. So they removed him from several medicines to give the bone marrow a chance to kick back in. The only scary part is, he's no longer on Chron's medication. If you've known me for awhile, you know all this craziness started almost 3 years ago when his Chron's disease went haywire.

High Blood Sugar/Diabetes:
For some unknown reason, the blood sugars are not staying under control. The bad news? He cannot take anything but insulin. The extra pills that others can take to help control it, Jerry cannot take. So, his high blood sugar (even with eating right and insulin) is causing things like the next point...

Diabetic Macular Edema:
You'll have to read up on it in the link provided if you want to know what it's all about, but basically at the moment, Jerry is going blind. He can no longer read, drive, and some days barely see. His right eyesight is bascially gone, left is headed that way. BUT there is good news here. They started a treatment on him today in which he gets a shot right into his eye. This shot reduces the swelling and fluid retention. Next week he will get a shot in the other eye. Each eye will get a shot every four weeks (each one week after the other) for 3 or 4 treatments. Then they will access the situation and decide what to do from there.
The shots should drain that fluid and allow him to see again. The only problem is his blood sugar. If he wants to see, then he has to fight, fight, fight to keep it under control.

Sciatica:
While Sciatica is common, it can be treated in most people with pain killers and steroids. Not with Jerry. He has to suffer through it with NOTHING. Some days he hurts so badly.

How is he mentally? 
He's ok. Obviously he's in pain, weak, bored, discouraged. Just hard to lose your vision when all one can do anymore is watch tv and read as it is! He's not happy that he can't drive right now. The sciatic pain is so severe at times, I think that is the most discouraging of all. But he keeps fighting and doing what he can to continue in his super hero state!

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How is Stephen?

Stephen went through a stage where he wanted nothing to do with his daddy. Nothing at all. But he's over it now and so sweet and helpful. In the last few days, several of my friends have surprised us by sending him goodies and I cannot tell you how the distractions have helped him.
He learned to read his first little phonics reader this week, and I devote most of my day entertaining him really. I try to get him to little kid activities, and play groups etc but it's so hard when we are at the hospital all of the time!
But God knew that when he created my sweet young son and he's doing ok. The home health nurses love him. He has acquired several vials of blood (red food coloring in water), syringes, other medical things from them. Wonder if he will be a doctor someday?

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How am I?

I could say stressed. Exhausted. Overwhelmed. These are true but you all know you would be feeling the same if in the same situation, I mean, who wouldn't be? So that is the obvious. I stress more about financial stuff than any of Jerry's stuff. Its horrid to say, but I am now used to him having things wrong. They don't stress me anymore. But financial does. The eye treatment center is trying to get financial aide for the shots. We have insurance but it, of course, never covers everything.

To help relieve stress I am selling off everything that I can. I sold my nice sewing machine last month. Many were shocked but, guess what? I have fingers that can sew, and no time to sew anyway.  And I now have a few more bills paid off. That is way better than having a sewing machine.

I do grow tired of shouldering the world of burdens around our home. Jerry, financial, sole playmate to Stephen, work, quilt design, I just cannot get enough hours in to do any of them so I usually just give up at the end of the day and go to bed even more behind. Like tonight. That is what I will do in a minute. I need to go down and cut fabric, and ship fabric. I need to close photos in my fabric group. I need to get ready for a video. I need to do dishes and laundry. It piles up. I need to clean.
But instead, I am going to shut down and just go to bed. It's been a long day.
I am ok guys, seriously. I am upbeat and postitive and I have learned that NOTHING comes before family.

I get so sad when I see people get downright angry over not having time to sew or do what they want to do because their kids or family got in their way.  I used to get so on edge when I didn't have solitude at least once a week. I don't get solitude anymore. At all. But I'm not all on edge about it anymore. I've grown up. Alot. We never ever stop growing up if we allow ourselves to learn from life. I'm still growing up and learning lots. Ha! And medical...I've learned enough there to write a textbook I think!

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By the grace of God, the Owen's family story continues.. one day at a time!



Friday, March 6, 2015

The REAL deal

Recently my daughter was over at her 'other' family's house and she got up to leave the room. When she did so, the family grilled my daughters fiance as to whether all this about Jerry could really be real. How could one person have this much wrong with them and still be alive? Is she sure we aren't making some of it up?

Then while Jerry was in the hospital last week one of the doctors (he gets visited by TONS from all the different teams of docs that he has.) and one dared to ask Jerry why he's ok at the hospital but not at home. Why does he come home and have to go right back again?

Well it's probably good I wasn't in the room at the time or I probably would have lost my temper. Because... Mr Doc Know it All.. you have a BLOOD BANK at your hospital that, ummm, we don't have at home!  You have an IV machine that we don't have at home. (smh). Jerry got two blood transfusions while he was there. He also got two bags of antibiotics and multiple bags of fluid. He's been home a week and guess what Mr Doc..he will need to go back next week for more blood!! (The nerve!!)

Thru all of this I have lost many "friends". People that quit reading, commenting, encouraging. I am actually quite shocked at a couple of them but its ok because trials define "friendship". I simply do not have time to keep up with blogs or sometimes even reply to emails. I want to but I simply just can not!  I am actually glad that you stopped. I have a couple of particular people especially in mind, and you know... at least now I know who was fake, huh?

My five year old son woke up today and came right to my lap. He then told me "Mommy, sometimes I want to cry when I think about my daddy dying, is that okay?" Oh this is all very real to our 5 year old.

My husband has had 7 or 8 transfusions just in the new year. He cannot walk, He can no longer write, and he cannot see well enough to read. He barely can eat. He cannot shower. Today he attempted to place a dish in the sink and fell to ground when he reached from his cane to the sink. He lives in the hospital as much as he lives at home. This is very real to him.

Yesterday someone spent the time to write how just how much she knows how real this is to me. She described my life to a T, it makes me think that she must have lived this reality herself at one time or another. Let me share the message:

I have you in my prayers each day.I know how hard you have it with Jerry and don't know how you do it. Taking care of Jerry, and Stephen and trying to keep up a business. Then there is taking care of the bills, keeping up with the doctors,taking care of a house, cooking and the list goes on. I have to do a lot of those things (except keeping a business) and of course we have to drive them everywhere too and make a schedule and work that out. Then I think what about me? When do I have time for me and if I do take time for me I worry about my husband. I feel your pain and all your going through. Then I think there are worst situations than what we have to do and there are people that don't have anyone to care for them. What do they do? found that our Lord Jesus is the one I need to talk to every now and then when I am by myself. At church on Sunday I felt the Holy Spirit lifting me up. Before I go to bed I pray and ask the Lord to bless and help my family and friends.You especially are included my friend. Don't try to be wonder woman and can do anything and everything. I thought I could be her at one time but only made myself stressed and sick You have a lot of friends that are praying for you and when they say that, GOD IS LISTENING.even when you think he isn't God loves you like all the folks that listen to you and pray for you. We love you.

I've never met the person that wrote that message. She has been shopping in my fabric group for awhile now but has not seen the madness over the last two years, yet she was able to COMPLETELY understand everything that is on my shoulders..and she knows that its for real. She made me cry because it was so sweet and it was just when I needed it. Not a single person can know what we are going through, but each person has trials of their own. Some are big and some are small but ALL are real.My final thought is this, If you don't love someone, let them go because they don't need fake. And yes, what Jerry is going through is for real. Just ask my five year old who wants to know if its ok to cry when he thinks about his daddy dying.

Saturday, February 28, 2015

A Window

Since my last post in January stating Jerry just got released from the hospital, he's been back in a couple of times and the day to day in between has been crazy... Filled with trips to the ER or trips to get blood.

Jerry just got released last night after another week long stay at his home away from home.

The latest is: jerrys bone marrow just drew the line. It had it with all the meds. They stopped half of jerrys liver treatment in January but it didn't help too much. By February he was pretty bad off again. I cannot tell you how scary it is ( and sad) to see your 53 yr old husband not even have the strength to hold his knife to butter a pancake.
Since I last wrote, Jerry has been in and out of the hospital, or the ER, etc multiple times. His bone marrow had quit functioning correctly which caused severe anemia and he has had multiple blood transfusions. Jerry just got released last night from a week long stay at his home away from home.

This last week at the hospital Jerry's care was switched (just for this stay) from the liver team to internal medicine and hematology. More members added to his team! Lol and team it was... Every morning they would conference outside his hospital room door then about 7 of them would walk in and discuss what they were going to try that day.

After a few tests and such it was determined Jerrys bone marrow is ok, it just cannot tolerate all the drugs anymore. So with him already not taking half the liver treatment, they took him off his Chrons  medication also. That seemed to do the trick. His hemoglobin started rising for the first time in who knows when. We are only a couple of days into it, we will see how the numbers look this next week.

After an EGD it was determined that he has portal hypertension and verices. I'll let you google that but it's not great news. The verices aren't bleeding yet, so that is the good news. They are going to run a scope next week to look at the severity of it, we don't know right now.

Jerrys diabetes hasn't been behaving either, all the infections and meds etc caused the medical team to have to increase his insulin again. Sadly this last week his eyesight messed up and he can no longer read. We don't have eye insurance anymore so I'm praying sales will pick up and we can buy him some new glasses. Maybe his eyes just need some adjustment time,mad he lost the reading ability over night, so it might settle down,  who knows. Now the selfish me is really sad because I look forward to reprieve from Stephen of an evening while Jerry reads to him plus I had tax stuff all ready to hand over to Jerry. I guess I best just buckle down myself and get it done. But I'm not as selfish as you might think because I am mostly sad for Jerry. He lost the ability to play guitar and sing a couple of years ago. Over the past year he lost the ability to be able to work, and even walk without aide most of the time. Now he can't read. Sigh.

THE WINDOW--

I feel like we will have a short window here where things will be calm for a bit. Jerrys hemoglobin will rise, and he will feel like he's among the living again. I'd give anything to grab Jerry and Stephen and just get AWAY while we can. Take a week and head to Disney world or something. Somewhere warm!

Jerry says I'm a pessimist but I don't think so. I'm a realist. And the reality is... He has end stage liver disease, and can't take his full medicine.
He has chrons disease that almost killed him two years ago, and can't take his medicine for it.
He has beginning stage portal hypertension and verices.
He has severe diabetes, with neuropathy in both legs and feet, that has recently moved into his hands.

The reality is... we have a window. I, for one, plan to enjoy it.
We hope to go to church for the first time in months. Maybe not tomorrow as its supposed to snow up to 5 inches but soon. Very soon!
And I do want to go take Stephen to the indoor water park maybe, if Jerry feels up to it.
We have to keep KU attached at the hip but I'm going to make every minute of window time count!

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Master Stephen has been a bit stressed. He got to the point where he wanted not much to do with Jerry, and his attitude wasn't great. He also wasn't sleeping well. But this last week helped. I kept Stephen away from the hospital and I spent two days home and devoted totally to Stephen. By the end of the week of not dealing with the stress of his daddy, Stephen got back to his normal self again and welcomed his daddy home with open arms. This is why I'd love to just take Jerry and Stephen to Disney world and make some kind of memories for the boy besides memories of illness, hospitals and doctors.

Im sure I'll be back soon to give more updates, but I hope not too soon :)

Sunday, January 18, 2015

And the year begins...

Jerry did so well over Christmas! But as the near year got closer his health declined again. Then he just down right got SICK.

He just spent a week in the hospital again, then came home and was back two days later to spend a day in the ER. ( That was yesterday all day.) Since the new year Jerry has been REALLY sick..like he was two years ago. The scary kind of sick when they watch him for strokes or a heart attack.

Stepping back a bit I do need to clarify that Jerry is no longer on the transplant list. They deferred him until later when his health improved, then they would re evaluate his being on the list. The surgeon even back in November during the evaluation told Jerry that its time to focus on quality of life not quantity and maybe, just maybe with improvements in quality they could work on quantity.

So, they started the new Hep C miracle drug that cost a major fortune but is getting all kinds of rave reviews and everyone is doing great on.

Then...there is Jerry.

He's been vomiting constantly. He's been getting weaker and weaker. He battles severe dehydration (thus the reason for our ER visit yesterday).  His hemoglobin is dropping. He's had two blood transfusions this past week...not for bleeding. Its because of how the drug is interacting with his bone marrow. He'll need another this week we are all sure, but thankfully his hemoglobin is dropping more slowly than it did last week when he needed the transfusions every 48 hours.

So... here is what they are doing for now to see if it works. His liver treatment they cut in half. It has helped the nausea a LOT. He's not vomiting daily anymore. His hemoglobin is still well below normal and is dropping, but not at the pace it was before.

Theyve ordered home health. He has a nurse that comes twice a week to check vitals and draw blood. Its so nice not to have to drive in to KU for labs, I'll tell you that!

He has a physical therapist but not sure what's going to happen with that. Jerry has been sitting for so long his body has deteriorated but the therapist told us there is nothing he can do until Jerry's hemoglobin gets above an 8.8. Um...haven't even seen that since they started tracking it again!
There is also an occupational therapist starting tomorrow.

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I am getting FUSSY. I am struggling maintaining my sanity at the moment. I had to fight with Jerry to get him to go to the ER a couple of weeks ago. I mean it was a huge fight, yet once he got there he was so dehydrated they couldn't find any veins and he needed a weeks long stay and two transfusions. Sigh. I am so so so tired of fighting him to get what he needs to survive. I have for FOUR YEARS. That was the first stroke...the first fight. It took4 days to get him to the hospital for that one. And the fighting never has stopped.( I mean medical fights..otherwise we love each other dearly and get along great and I protect him like a hawk or something..I just have to fight with him medically far too much! )  I am just weary of it. He reads this blog..and I am at a point I don't care because I need the world to know why I get fussy. I am just stressed to the point that I cannot be stressed anymore. I am really glad home health is now in place and can call the shots instead of me now. That will help. Like yesterday...

Then there was yesterday. The therapist felt Jerry needed right back at the hospital, and worried about me tryingto get him into KU. (they dont come out to help at KU..you are on your own). So we called an ambulance. Then yet another battle. The fight about him NOT going to Cameron. They refused, argued, were absolutely JERKS about it. Well I shouldnt make it plural. The man was nice; his female partner is getting reported Monday. She would not listen and I finally told her to get Jerry unloaded off the stretcher and get out of my house and I'll never call them again. Its true. I won't. I know there are laws in place BUT she needs to not be a you know what and LISTEN TO ME. I was assured there would not be a problem in the future of taking Jerry clear to KU. whatever.

Then.. we got to KU. Just me and jerry. I call the ER and ask them to please send a tech out to help. Some lady from the desk comes out and says, we don't do this but I'll help you. great. whatever.

Then KU is a teaching hospital...remember that. Most of the time we don't mind. But some resident doc comes in and tries to do this that and the other to Jerry. I hit the roof at the rectal exam and didn't allow it. I told him READ THE CHARTS HES NOT BLEEDING!! Finally the ER doc came in and agreed... after reading the charts. But it was just the run around of unneeded test after test. To get some bags of fluid and to be sent home. What. A. Day.

There was a blessing in the midst of that mess yesterday. Two in fact. Three actually. Men. I cannot believe I am saying that! (just kidding). The male EMT was beyond nice in trying to make up for his quite the opposite partner. (By the way, she is the same one I had a fight with a couple of years ago when jerry had a stroke and she swore he didn't. He lost hand movement on that stroke.At the time we were dealing with Liberty and she refused to take him to Liberty. )  The male Home therapist that saw my point that my husband is sick and no way he can do physical therapy, and agreed with me that Jerry needs in the hospital, even if the hospital didn't agree was blessing 2. Then blessing number 3 was an ER tech. He does rescue copter work during the week and ER on the weekend. He was the most helpful of all, telling me how to deal with the ambulance and that home health has to initiate and make the call to NON emergency and request a transport to KU. This way its a transport from one system to another and there is not a thing the ambulance crew can do about that. They will be forced to go to KU. He also told me to move out of Cameron. Said he's been working the skies for 20 years and I need to get to a better community with better service. Cameron is not known for it. At all. (don't I know it??!!) Then he said I need to call social services at the hospital Monday and get some action. Ask them how this is supposed to work...when I can't work. How am I supposed to care for myself when I am so wrapped up in Jerry. Tell them that they need to figure out how to make this work so I am not having to run to the hospital weekly or at least get aide for all my missed work. I might work from home but all that means is I dont get sick leave or paid vacation time!

So, I am ready to knock some heads together but in order to fix that I am going to try to get Jerry outside today for a Sunday drive at least. I think we both need it and its supposed to be 60 degrees today. We may not be able to get out of the car and walk a trail but just getting away from everything and driving would be nice. I was hoping to leave already but I went to wake him and it didn't happen. He didn't even hear me at all.So I'll give it a couple more hours then attempt to get him up and around. I need it! We need it!

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Stephen is doing ok. He gets shuffled too much. I have asked the advice of several people concerning his schooling next year. I cannot believe I am saying this but I just don't think I want to home school him. But I REFUSE to put that sweet boy into a public school with its stupid common core curriculum and the fact that they will not be understanding of him missing lots and lots of days due to his father. Therefore I talked to a very small private school and explained the whole situation. I am waiting on me (when???!!!!) to get my taxes in order and done so that I can apply for financial aid. I pray we can afford it because I really do think this is the best for Stephen. We would move south about 25 miles or so. This would put us very near the school, our church, very near Amy and that much closer to KU which would be awesome! I just need to get some money together for said move. Which means I would need to work harder..and um..I've not opened my shop in a week and a half. There's the cycle of insanity again...

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Anyway, not to be all negative we see lots of blessings as well. My shop might not be open but the website version gets hits from all over the world and I am selling things on there I would have not thought to carry before I had a shop. I just sent two big packages to Denmark and I have a large order in the works from France, another went to Tasmania. And of course the states! Just when I am most in the dumps (this week) and worried about shutting the brick shop..should I or shouldn't I.. God sends someone along. I got a phone call Friday from someone asking me if I could meet up there..and they spent $250.  I got a phone call Saturday asking me if I was opening..um no couldn't do it. She says, "Honey its no big deal, You know I drive from Kansas to come see you and we love you and understand.. you just hang in there". And there you have it. I can't close the store. I don't think God wants me to even though its rarely open!

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Well this has been a long post but it gets you up to speed about everything. I don't know what the next few weeks will bring but we'll just take it one day at a time..one day at a time.







Friday, January 2, 2015

A year in Review: NO WAY!

So many use their blogs at this time of year to post their accomplishments for the last year, their missed goals and their goals for the new year to come.

Not us at the Owens home.

OH by the way, if you are reading this and you are hoping its about quilting..then best head on over to HillbillyQuiltShop.blogspot.com. I'll be over there shortly to blog what has been going on in the Hillbilly World. This blog is all about the Owens homestead..especially about my husband who keeps trying to find new ways to kick the bucket but I don't let him.

Yes, I can joke about that! Why? because if I didn't have humor, my goodness, what a mess I'd be. I mean, there are many times over the last, say 4 years since Jerry had that very first stroke that I've been a mess. A real mess. And over all that time, I thought two years ago would have been the most trying on me, both physically and emotionally but nope. This past year certainly topped it! But, this year we also saw so many blessings. Through trials in life, that is when we really see and feel the blessings and the Hand of God, so while it is really hard for me to say, Thank you Lord for those trials, hindsite, I actually can!

Now..enough jibber jabber. Here's the latest news:

Jerry has been on his expensive treatment for a month. The liver will never be healed. Someday he will need a transplant. The doctors are hoping the pills push it down the road a few years. No one knows. They've never had a case quite like Jerry since this is a brand new medication, so everyone is just waiting and watching.

Jerry is getting up and moving around more. His mind is more clear and he is no longer yellow. He does have very frequent nausea and his gut continues to be enlarged. We have to be careful of leg swelling as well. He is still not able to walk distance, he coughs and chokes all of the time.

He has to go in and have his arteries checked that run between his heart and his liver. They fear blockage and need to see how bad it is. I don't know when this procedure will be, they had one scheduled for during that short time span when he had no insurance, so he couldn't have it done.

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I am doing much better. My little store allows me quiet time to actually get work done. Lots of work done. Even if customers never come in it is so nice having office time without guilt..because at home it just doesn't work that way. I am not all on edge anymore, and we've settled into a routine. I like routine.

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Stephen is a goof ball and still our angel. He just turned 5 and his greatest desire on any given day is to go spend the night with his sister.

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Seth is 17 and driving and not chasing girls. He's a homebody.

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Amy will be 25 soon and maybe will have wedding bells this year. Who knows?  She has two dogs that are her babies, but she keeps Stephen at her house once a week so I can work a long 15 hour day of cutting fabric for filling orders.

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To my friends; I am sorry I once again did not send out Christmas cards or wishes. During the last two weeks I took a LOT of downtime away from media. I just wanted to be with my family. I am sure you can understand why. We didn't do a lot out of the ordinary, but yesterday on New Years I had some time alone on an outing with all three of my children and we had a great time. We went and played laser tag, as well as went thru a mirror maze. It was nice just pushing worries aside and having fun. I am trying to find more time with Amy, because we have settled into a routine of her just watching Stephen and never having mom time. So, while we do drag Stephen along with us, we try to find time to go shopping. We went to Ikea. Not sure I want to do that again..she had us there for FOUR HOURS! lol!!!

I hope over the next year to blog nothing but good news about Jerry, but I remain ready: come what may.