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

Saturday, March 9, 2013

One complicated man

I have had my reasons for not sharing as much about Jerry online but I think after the months of prayers, cards and kind emails, it is only fair to update how he/we are doing on occasion.

Jerry is no longer being seen by any Liberty Hospital doctors. He has been working on making the switch over to KU doctors. Keeping in mind a visit to KU is a day long affair for us; 3 hours in the car alone. He never feels well; but the last two weeks he's felt pretty poorly. Hes missed a lot of work lately. This is something that he will struggle with his entire life. Some good times with many downtimes in between. Since I have so many new groupies in the fabric group and new ahhhh buyers that might like to know the personal side so I will give a quick run down of what he has and list the Dr type beside it.

Diabetes and neuropathy--endocrinologist
Crone's and history of colon cancer--gastroenterologist
Hep C (he hates me sharing this but it was from a blood transfusion when he had cancer. it is important to know...more in a bit)--Hepatologist
History of Stroke (at least ten)--neurologist
A-fib heart issues--cardiac specialist
Thyroid disease-- his PCP handles this for now

Of course knowing all of this you can imagine the amount of meds he takes. But the hep C, Chrons and diabetes all fight one another. They cannot treat them all at once. So the plan is to treat the Chrons right now (in fact he goes Monday to meet with his gastro doc to get a plan laid out. Up until now they have had to just treat the symptoms and get him stabilized.) Before long they will be doing a liver biopsy to see what stage the Hep C is and how the meds are affecting his liver.

The steroids that were completely necessary to get him back among the living are done now but it did a number on his diabetes. His eyesight has issues. He just got new glasses last week but his eyes continue to fluctuate. He struggles with his hands and fingers. Playing guitar is a thing of the past. His feet suffered the most. His neuropathy is horrible and due to the stroke/blood thinners they are not sure what they can give him. The doctors are looking it over and trying to come up with something that will not interact with all his other meds. For now, he just has to suffer with the pain and no pain meds.

He continues to work when he can until he no longer can. (Hes a man, he reads this blog so just don't go there!!) (( I love you husband))

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How am I?

Well I still struggle to find ME time. I think I have it all planned out but then get setbacks. Like his being off work makes me feel like I need to sell more fabric. I went one week with sleeping every night but I failed in that this week.

I HATE being 'behind' and seeming to be unorganized. Invoices (both ahhhhhs and fabric) don't get out as fast as I like but I do the best I can I suppose. I know I take no time to sew or read or anything like that. The only ME time I can take right now is sleep.
 (Now no pointing the finger at me until you have walked a week in my shoes. Seriously. I would not enjoy taking time to sew or read knowing I had work waiting to be done. )

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How are the boys?

Stephen really really could not handle daycare--even though it was just two days a week. Wow what a change it made in that boy. He was depressed all of the time and cried day and night (even waking up during the night and having nightmares) begging us to not take him to school and that he needed his daddy. We figure it was just too much after him going through the stress of his daddy being in the hospital for three months. It took him about two weeks to realize I was not taking him back and he is our happy little boy again. He really is a laid back, nice child. By far my easiest of the three. (God knew I needed that!)

The neatest thing is he has become so attached to his daddy. When Jerry was sick, Stephen detached himself from him and it was a struggle to get him to even talk to his daddy. But now I have a hard time keeping him from waking his daddy up at 7 am to play! He loves to lie in daddy's bed and watch movies and they are best buds. Jerry is feeling well enough to play with him of the evenings and while I type they are out getting a haircut and Chik fil a.

Seth is doing well at helping me work. He now tapes all the boxes up for shipping and he rolls fabric to put into the boxes. (I cut, he rolls..it is a great system.) He usually watches Stephen of a morning while I handle morning messages.

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Our schedule of sorts (especially important as the fabric groupies are always wondering where I am. Probably easiest to find me at like 2 am!!!)

While this does change--especially when someone gets sick--this is basically how we work things around here:

Morning--get Jerry off to work by 7:30. Wake Seth at 8. Go handle emails until 9ish. Have the boys come help put boxes out for pick up. Then spend the next little bit trying to package some Ahhhhs.

By 11 we try to be in school mode. Lunch at 1. Nap at 2. I often nap because I get more work done late at night. Seth does some school assignments during nap and has free time.

By 5 Jerry is home and in bed for a nap himself. We wake him up for dinner at 6:30 then I am hopefully working by 7:30. (if Jerry is having an off night I wait until bedtime.)

Stephen goes to bed around 10:30 so if I am not working already this is when I start.

Fabric and Ahhhh schedule is such:

Sunday--OFF (but I don't always get to. I try to stitch an ahhh up on this day)
Monday--list and cut fabric
Tuesday--list and cut fabric
Wednesday--list/cut/invoice fabric for shipping
Thursday--handle final fabric invoices
Friday--OFF (this is supposed to be Friday fun day for my boys and I am going to try to stick to it better)
Saturday--print packing slips, get ahhhhs taken care of for the week, order new fabric

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Which brings us to today and I am completely off schedule. I have to go catch up on lots of fabric cutting because Atlantis has arrived at my house :)




14 comments:

Belinda said...

A very comprehensive account of your life as you know it. I'm sure we all appreciate you sharing it with us and knowing how you operate helps us to understand you a bit better. The stresses you face are certainly not the norm.

I've been wondering about Jerry and how he's been doing the last few weeks. I continue to pray for you all daily. Often times more than once.

Thanks for the update and the peek into your daily life.

With much love,
B

Tami C said...

You have a VERY busy schedule. I would be pulling my hair out long ago. What does KU stand for? I know what fighting against so many different things at once is like. I switched over to Kaiser Permanente a couple of years ago & am much happier with them. It's nice that the different doctors all have access to the same info. Good luck with the switch & God bless you all!

Min. Donna Snider said...

KU = Kansas University Hospital very good and has lots of specialist. It is also a teaching hospital.

Christine M said...

Thinking of you and your family Tonya and sending hugs. Christine xx

Beeshebags said...

Thanks so much for sharing about your life Tonya, I may not always visit to say hi, but I do think of you often, and if someone is doing Hexie paper piecing, I always send them to your blog as I love all the explanations on how to draw your own up etc.

Big hugs and hope you get some "me" time that's not just for sleep soon.

Naomi

Terri in BC said...

I think of you and your family often, and I am amazed at how strong you are. Crohn's is a hard disease to cope with, on top of all the other issues. Prayers that life get better soon, and don't worry about us. It's not like fabric or templates go bad ;o)

Robin said...

Keeping you and your family in my prayers Tonya! you all have alot on your plate...hang in there!

elliek said...

You are in my prayers always in the hope that life will get easier. As Terri said Ahhh's and fabric don't go off so they will keep so don't stress. Hugs to you all

Pat said...

Praying that life will get easier for you, Tonya. That's a heavy load you carry xx

Snoodles said...

Good to have an update, my friend....still praying for all of you. Warm hugs coming your way!

Patty said...

you have a very diverse lifestyle. LOL I am glad you can continue to be upbeat. Let Hubby know, my Mom has Hep C also, and has had it for almost 30 years. She got hers from a blood transfusion, too. And yes, she is doing ok still. She is in her 80's, so is getting a few struggles, and we are all having to learn all over again.Hugs and prayers to you all.

Pokey said...

Life is, well, life! I feel for you. Our life has been really turned around with Larry's health issues, and finances are brutal. I think of you with the kids and homeschooling on top of all of it, and the uncertainty of Jerry's health, you are remembered in my prayers, Tonya. Oh, and my sweetie has liver sclerosis, and was never a drinker! Things happen. I'm glad to have Jesus, aren't you?
:-}pokey

Carla said...

I was thinking about you. I'm glad to get an update even though it sounds a little stressed but do-able. We all have to carry our cross and yours just gets a little heavier. You're a strong and determined woman. Yes we all know about these men. LOL Hi Jerry if you're reading. Glad to hear you can work when possible.
Hang in there. Hugs and prayers from Texas former Missourian. ;o)

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