I got up earlier than Rick - which is what I normally do. But today I spent time in prayer and reading the Word. Needing to find the assurance that no matter what the decision of the Social Security Administration was -- GOD is in control. And He IS!
No, I did not get disability ... and no I did not get SSI. One must have worked 5 of the last 10 years in order to even file for disability. And Rick makes too much for me to be qualified for SSI.
They no longer take into consideration the bills of the house ... only the number of people in the house, and the total home income.
So, once again ... we fall thru the cracks in the system.
Rick makes too much for me to qualify for help ... but he doesn't make enough for us to live.
The only other option at this point? File for caregiver status. File for Medicaid for health care. File for a waiver from the government saying that I just cannot afford health care.
I know that God is our Provider. And I know that God doesn't need all these programs to take care of us.
He fed the children of Israel for 40 years in the wilderness - manna from heaven.
God is the same today as He was then. He will take care of us.
Whether He chooses to use a program ... or one of His children ... or even someone who refuses to admit there is a God ...
GOD WILL TAKE CARE OF US!!!!!
He will either meet our needs ... or change our needs.
Once again, we are finding out that what appears to be a need, is not necessarily so.
Rick is fighting the discouragement and weariness of the struggle. He told me on Monday that he was "that" close to giving up. He said he is tired of the pain, tired of the struggle, tired of this world. Weary of not knowing how we are going to make it. His faith is wavering - because he is human. The enemy knows just where our weaknesses are ... and that is where he strikes the most, the hardest. Praying for my husband. That he will call on Jesus - and that Jesus will lift him up.
Dialysis is hard on the body ... it wears one down. Makes him weak and tired. And falling twice in the last 3 months hasn't helped any either. Sigh. But then, to be honest - sitting around, or laying around, hasn't helped. Hasn't worked the soreness and stiffness out. Hasn't helped to build or maintain muscle strength. Praying for my husband. That he will call on Jesus - and do what he needs to do. Do what he can do. And sometimes? That is simply breathing in and breathing out.
We went to the Post Office after my phone interview ... There was a check from the Social Security Administration. They are taking the money out of Rick's disability check to pay for Medicare - but the Kidney Fund is also paying for that. So, the Social Security Administration takes the money out of Rick's check each month, but then when they get a check from the Kidney Fund, they send Rick the money. However they want to work it out! It was just good to get that $300 yesterday!!!!!
--we were able to get Rick's insulin needles. ($9) He has been without insulin now for about 4 days.
--we were able to buy the stuff to make chicken and dressing for Wednesday night ($20) - MeMe's Christmas at Mandy's this year.
--we will be able to get the stuff to make baked beans, a green bean casserole, and a dessert for Saturday night's Christmas at Coffee Creek. Including buying 2 $10 gifts for the Chinese Christmas Exchange. ($25 for the food, and $20 for the gifts)
--Rick will be able to fill the car with gas on Thursday so that we can get back to Santo, TX. (about $40)
--when we get back, he will be able to get the propane tank and fill it. (about $35)
--and I should still be able to get Rick's insulin - IF the COBRA insurance has kicked in. Sigh. ($35 with the insurance, but over $700 without!)
It's not easy to live day to day in faith ... I once told Rick it would be a lot easier to live by faith if the money was in the bank! LOL
Back home. Fixed a pan of cornbread to go with the left over chicken stew. The cornbread was good, but the chicken stew - well, just not hitting the spot this time. Sigh. Oh well ...
Watched "Dances with Wolves" last night.
Bedtime again ...
Tending the fire ... it's 39* outside ... and this fire is NOT wanting to go! A few coals, but there isn't enough draw to have a fire. Sigh. One of "those" times ... makes me miss my electric fireplace even more!!! Sigh. Thanking God that we are not homeless. That we do have a roof over our heads, and walls about us. Thanking God for an electric heater in the bathroom - thank you Kent!!!!!
Spending time with the Lord - in my journal, and in His Word.
Chatted with my sister, Bettie, some. Going to call her today - need to hear her voice!
--did call her. Enjoyed the visit. I sat in front of the open fireplace while we talked - that was nice, felt like we were sitting there together around an open fire. Sigh.
We have some phone calls to make today. Praying for mercy and favor with those that we talk to.
--Rick made the phone calls today. He got a little stressed, but not too much. It's not easy to call your bills and tell them that we don't have the money to make payments right now. Sigh.
Going to have more COFFEE!!!!! Sigh.
I am going to cook my cornbread today for making chicken and dressing tomorrow. We are gathering in at Mandy's tomorrow night for Rick's mom's Christmas dinner. Looking forward to spending time with my daughter and grandchildren.
--got the cornbread made. Ate a few of the crunchies from around the outside. Thought about Momma ... thought about my sister Bettie - and remembered how that when we were together at Momma's when she was cooking her cornbread, Bettie and I would eat the crunchies while Momma fussed at us to be sure and not get anything BUT the crunchies! LOL
The rest of the day was just one of those so-so days ... kinda wandering thru this big old house - feeding the fire, playing with Cheri, not doing much of anything.
I finally "found" my recliner and my blanket. Sat down, covered up and dozed off. Felt good to just be still and be quiet.
We don't have TV service here, nor the Internet. So that is different, when you are so used to turning the TV on when the house is quiet, or sitting down in front of the computer when I have a minute.
The only "bad" part of the day?
I went out to the car around 4:30 p.m. to get the dialysis solution for the night. Had to make 2 trips. And I still needed to make a third trip to get some drinks for the night.
Rick decided to get the drinks - thank you. But he started out the door in just his shorts. I told him it was cold outside, with a north wind blowing, and that he didn't need to go out there without either a shirt or a coat on. Oh my word! Believe me - I have wished I had just let him go!
Now, in my defense - I was only caring about him, didn't want him to get cold, didn't want him to get sick. But -- that's certainly not how it came across to him! Oh my!
He got so angry!!! Angry that he couldn't do what he wanted, like he wanted, when he wanted! That he had to wait until someone TOLD him what he could do, when he could do it, and how he could do it. ??? I was caught totally off guard! There was NO warning whatsoever that he was "on the edge". Sigh. (Usually I have some kind of warning, and I kinda know when to pull back, or what to say, what to do ...) Anyway, he went out and got the drinks. Came back in. He was angry enough that it concerned me for his blood pressure - but I dare not say a word at this point. I just watched him closely. He ranted and he raved a while. I tried to talk to him - but he wasn't listening, so I shut up.
And then ... sigh. There is an old saying - that sometimes the only way to fight a fire, is with fire. Well -- I have learned that there are times that the only way to calm him down from one of these outbursts is with an outburst of my own. So ... not proud of it ... don't like to do it that way. But I did. I got carried away on a rant and rave of my own - not one directed at him in any way, just something in our life. He sat there and listened to me, watched me pace the floor while I ranted and raved. And then ... "Calm down! just shut up!" And I did - since the whole outburst was to calm him down, it wasn't hard for me to just shut up. Sigh.
The rest of the evening was spent mostly in silence between us. Just a word here and there. We went up to Jimmy and Mary Lou's for supper - a sandwich - and a visit. Came back here around 7. Watched "Tombstone". Went to bed around 9:30 -- or at least Rick did.
For me ... this was my Facebook post -- "How dark the night, how deep the loneliness ... especially after a hopeful morning, that is sadly followed by a bad afternoon and evening. And rather than being able to lie down and sleep into forgetfulness, the insomnia makes the darkness darker and the loneliness lonelier. Humph, how's that for "good night"? sigh. Sounds like coffee and prayer time to me! (Yes, I am talking to myself AND answering myself. Reread this post and you will understand. LOL)
I didn't have coffee ... I tried to pray - ended up just sitting in the comfortable chair on a heating pad and just being quiet, letting Jesus pray for me.
Finally dozed off - slept in the chair until 2:45 a.m. Got up, laid down. Stayed in bed until a few minutes after 6 this morning.
I am slowly (oh so slowly) learning that good days have bad moments ... and bad days have good moments. That's just the way of life ...
And life for a dialysis patient and wife? Well sometimes it is enlarged and amplified. Sigh.
Rick took a shower - and that always tires him out, but especially in that claw foot bathtub! He doesn't feel as secure on his feet as he used to. (He ISN'T as secure on his feet as he used to be!) So, just the climbing in and out of the tub is nerve-wracking! We both worry about him falling. He worries about the pain of falling, and the problems he has with getting over a fall. I worry about that, too - but I worry about how in the world would I get the man up??? I cannot handle him! Lord, please - protect him now and always.
I took a shower - enjoyed the longer shower. Been taking the RV showers ... and I thank God for the hot water in the RV - but it is nice ever so often to take a longer and hotter shower.
I made the chicken and dressing to take to Mandy's for MeMe's Christmas dinner.
We left the house just a little early - went to Mandy's, checked on the turkey, dropped off the chicken and dressing. She said that she would put it in the oven around 5 if I wasn't back.
Made a quick trip to Paris. Got the dialysis center just a couple minutes after 1:30 ... still had to wait! LOL Rick had lost down to 262. A month ago he was at 281 - so, he has dropped the 20 pounds of fluid! Praise the Lord!!!!!
Nurses had a hard time finding a vein for the iron therapy - finally did. Rick HATES to get the iron - he says it hurts. And he has to sit so perfectly still while they are doing it - and it makes him feel trapped.
We had a good long visit with the Lisa, his nurse, and with Dr. Greenwell. A couple of changes -- Dr. Greenwell is concerned about Rick's blood pressure. He thought maybe it was higher due to the fluid overload - but it hasn't come down. So, another blood pressure medication has been added. Amlodopine. 10 mg at night. I hope it works good, and doesn't lower it too much. But I would like to see numbers below 140/90 for a while! At the clinic it was 212/109! Sigh. We all know that Rick has "white coat syndrome" - but even that is too high!
And Dr. Greenwell wants to see lower blood sugar numbers. His average lately has been around 300. Way too high even for using the higher number solution for dialysis. So, rather than add an oral medication back - Dr. Greenwell wants to try Humalog, the combined insulin, a long-lasting and a meal-time. Given 30 minutes before breakfast, and 30 minutes before the last meal of the day.
Rick was not happy with the visit. He doesn't like change - never has. But since being a dialysis patient, oh my! The dislike for change has increased a hundred-fold!!! Which makes it hard for all of us. We try to just pray our way thru it all. Thank God for a Christian nurse, and a Christian doctor!!!
We made it to Mandy's that evening around 5:30 ... we weren't the first ones to arrive, but not the last either. So good to see everybody again - to hug and to laugh. Jimmy and Mary Lou. David and Tina. Aaron, Crystal, Sumer, Kayleigh. Greg and Haley. Mandy, Elijah and Brooklyn.
Mandy did an EXCELLENT job with the whole night! She had moved 4 tables into her living room so we were able to all sit around the table, talk, laugh, and EAT!
Oh my! The food!!!!! Turkey. Chicken and dressing. Cranberry sauce. Green bean casserole. Potato casserole. Chicken, broccoli, rice casserole. Baked beans. Corn. Mashed potatoes. English pea salad. Pink salad. Hot rolls. Buttermilk pies. Lemon cake. Strawberry cake. Pumpkin cheesecake (Mandy's creation - oh my! Good!!!!!) More food than what we could eat! We were all STUFFED!!! After supper, while we were putting the food away - we were all groaning and moaning, complaining about our tummies being so full! LOL
Such a good time!
One last visit with Jimmy and Mary Lou.
One last stop at the Post Office - a Christmas card from my cousin, Johnny. With a check for $150! Thank you God. Thank you Johnny!
Rick decided to take the southern way back to Santo. Why? I don't know ... the last time we took it, he told me - "Remind me that I don't want to EVER come this way again". But if you are married, you know that trying to tell a man which way to go - well, just not the best of days. So, I shut up ... and I drive. Trusting the Lord. Thru Emory, Canton, Athens, Corsicana, Hillsboro, Meridian, Hico, Stephenville. Not a bad trip (per se). It had been a while since we had been that way. Had it not been for trying not to stress over the time (cause I needed to get to Walmart before Dr. Greenwell left the office) ... it would have been better. I really tried to just chill out and drive ...
Dropped everything at the house. Turned the heaters on.
Mad dash to the Walmart pharmacy. Dr. Greenwell had changed Rick's insulin - from the Lantus Solostar ($35 a month with the insurance) to Humalog. When we got ready to pick up the Humalog, it was $70 with the insurance! WHAT? WHY? The pharmacy tech could not tell me why. Said there was nothing she could do - that we would need to talk with the insurance. So, all I knew to do was to fill the Lantus Solostar.
--the Lantus was working pretty good. At least there were more mornings below 150 - those mornings when Rick didn't have to take a shot. His A1C has been creeping up the last couple of times. But in the last 4 months, Rick has done less and less, more and more. So, is it that the Lantus is not working anymore, and Rick needs another insulin? Or is it that he is eating more sweets, and has less activity? I don' t know. But we couldn't afford the Humalog.
--I will be calling Blue Cross/Blue Shield to see why Rick's prescription card says for the co-pays $20/$35/$50 ... doesn't say a word about $70. Sigh.
--I will also be calling Dr. Greenwell and telling him that we cannot afford $70 a month - see if there is a program that Rick can be on to help.
I was able to get all of Rick's meds and mine (even tho I have only this refill on two of mine, I will have to see a doctor before getting them again) - the cost was $110. Thank you Johnny! God bless you many times over and above! I love you!!!!!
Whew! What a day!!! I was so keyed up by the time bedtime came around, I didn't sleep or rest much.
But we are back at Coffee Creek ... in our rv ... so, this trip to Sulphur Springs is DONE.