Lessons

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Today’s post is on lessons. Lessons are learned most every day in some form or another. The big lessons stick with us all our lives while the everyday small lessons somehow get swept under the rug. Each new day can serve up many varieties of lessons ranging from the sublime to the painful. I personally get some hard hits but try to roll with them when possible.

I am learning a new language. I began years ago just learning basic things and then let it slide. I have found a wonderful program called ILang, which makes it like a game to learn and I am progressing much faster and easier now,  It has flash cards and memory games (ok, on a good day memory is fleeting), plus games where the words are spoken and you pick the answers. So far so good. I am learning tagalog, the language of the Philippines. You see, three of my granddaughters live there with their mother, They know english too so it makes it nice to be able to converse with them.  I got lazy but now I am loving this way to learn something new. The app was free too! I am trying to keep this brain active. 

I have also been learning all I can about gardening with non GMO seeds. I will be starting my seeds next week indoors and I cannot wait to get gardening again. My garden last year was so enjoyable to me and gave me a focus while I was laid up after my surgery. It is so satisfying to me to get my hands dirty in the soil, planting nutritious foods to enjoy over the long winter months. This is going to be a big garden this year so I am excited.

I am also learning the art of canning my foods. It is wonderful to find that something I thought was difficult,is actually quite enjoyable too. I was going to learn a few years ago but after reading the instructions, I began to rethink it. The instructions look intimidating. I never thought I would do it. However, after purchasing my pressure canner and getting a quick lesson in howto can, I am finding this to be enjoyable and economical too. For example, I bought a large turkey in November. I cooked it last Friday. There are only two of us here so what did I do with the rest? I canned it.   I have raw packed chicken too. It is so simple. Who knew? I mean, when meat is on sale or if you get a bunch of some type, you can process it in canning and store it on your shelf instead of your freezer! Another lesson for me.

Sadly, another lesson in my life is about addiction. As I have stated previously, my husband has a problem with alcohol.  He has promised numerous/times to stop only to begin again once his body recovers from his most recent binge drinking. He cannot have many more detox’s in him. It is most painful to watch someone you love kill themselves slowly over time and know you cannot stop it. I am in a good place now. Peaceful. Did I move out again? No. I just found that by praying for peace, it does come. I also found the blog I mentioned previously, The Immortal Alcoholic, and it has given me insight into how to maintain a peaceful life living in the chaotic world of alcoholism. It is amazing to see that you are not alone, kind of like those of us with autoimmune disorders feel when we find others to share our experiences with and get feedback. Who knew?

I think a lesson I have been learning for some time is finally coming into focus as well. I am learning to accept my limitations for what they are and to live with what I have been given. It also brings me peace to know this. I have been bucking the system for so long now, because I did not want to admit I am unable to do many things I think I can do in my mind. Acceptance is great because now I can work fully with what I DO have not what I wish I still had. This lesson was the hard one. How do you do it? I am not sure I know how it happened in my case. Patience is NOT my superpower. I believe that once I realized that the blessings are still there, just a bit different, is when the peace began falling around me. Funny that. I guess I was so busy concentrating on the thing I could no longer do, that I did not realize there are so many things I CAN still do. I still mourn the loss of the those things from before lupus. However, I choose to think more of the here and now. It really is freeing.

That’ls it for now. I hope you all are pain free and looking forward to spring. I am… I have big plans!   

Placement of Priorities

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Hello once again!

As the title implies, this post is about priorities and listening so they can be placed properly. I have been quite depressed as of late. My lupus is really ugly right now. I am having major issues with my gi tract from top to bottom. I am dealing with drama within my family. I am back on prednisone. Basically, I cannot eat well, cannot sleep well, and am a round moon face sicko.

I had a bright spot yesterday I thought. My rheumatologist wants me to start Benlysta infusions. I was in the drug trial with real drug and it helped me a lot. Once it was approved though, the drug trial ended. So, he wants to do these infusions to try for remission. Remission is a word I have not heard for years!

Back to the story. My rheumy’s nurse called and said she had done the legwork and for me, my insurance would only cover these at an 80/20 ratio. In other words they would pay 80% and I would pay 20%. Ok, what does that mean? It means it is cost prohibitive for me. However, she next tells me that my 20% equals $250 per transfusion. Still cost prohibitive for me. Now she tells me that there is this gateway program that will pay for the med itself. So, I only have to pay the office visit ($40) to begin infusions and as for the $250, I can be billed and pay as I can! Wow! That is great news! Finally it is looking like I might get some type of relief from this all pervasive pain!

So, I decided to share this good news with my husband. I didn’t even finish the details before he exploded and told me that there is no way we can afford this! He also told me to cancel finding out about any thing else related to this! He told me I was wrong to even consider it. Seriously! He said it would be another bill and that we cannot take this on.

He stormed out into his garage room. I was numb. I really was in pain emotionally now. I thought why try anymore? You know, if I had cancer would he do the same thing about a med? Is he really so self centered and blind that he cannot see or comprehend how insensitive he was? The answer, sadly, is yes. I saw a new side of him yesterday. It is a powerful revelation.

I have been here to help him overcome HIS issues and done whatever was necessary to make sure he gets care he needs. You know, the Golden Rule. I saw yesterday that no matter how much I give he will only take. He truly does not seem to care about any of my issues at all. He went so far today to say he didn’t want to hear anything about my call to another doctor regarding a different issue. Guess I know where I stand.

A friend of his passed away yesterday afternoon. (This was after our conversation above had occurred). Now today, he told me his friend isn’t having s funeral. His wishes were to be cremated and his wife was to hold a sort of wake. My husband, the recovering alcoholic, told me he was going and would have a drink for his friend! Wow! It is almost like he was waiting for an opportunity to drink. He assured me he was going to stay sober but only have that one drink. Uh huh, right. He might delude himself but I have seen this behavior before. I tried to reason with him about slippery slopes and how he was all but dead himself a month ago. He refuses to listen. Well, I tried.

I came back here with assurances of sobriety and caring for my well being. Bait and switch. Jokes on me. Bad day. Sorry to bring anyone down but this is my reality right now. I will survive. I will have to go on chemotherapy if Benlysta is off the table. Oh well, I actually want to live so we will see how this plays out. I am just so sad to see and hear how my issues do not matter to him. Actions speak louder than words so if his words match his actions then I am alone on this painful island. Well crap.

Wow!

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The title says it all! It has been one of those weeks. You know the kind, where things are either up or down and nothing in between. It has been a week of hills and valleys. On the positive side, I got to see most of my grands this last weekend and spend time with them. Time well spent indeed.

On the negative side, the flare is ongoing and added to that was a particularly nasty flu bug. My granddaughter had it first, gave it to her parents and then I got it. So, this last week was a blur of love, fun and then vomiting and diarrhea. Wow! I am ready for some middle ground this week.

 

My precious Peanut

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My little five year old granddaughter Audrey, and her baby sister, Courtney, went camping overnight with us this past weekend. It was Courtney’s first overnight away from her parents and she did wonderfully! She played and got dirty, and played some more and got dirtier and had a blast! We ate nutritious meals of hot dogs and potato chips and drank soda and never had one glass of milk the whole time! A true fun filled weekend with grandparents!

I have a funny story to relate, that most of you can relate to as well. In the car coming home yesterday, my hubs was riding his motorvyvle in front of us and we were in the car. When we reached Franklin, Audrey said, “Papaw is sooo handsome” and I said, “Yes, he is, I think so too.” She then said, “Meemaw, if he wasn’t married to you already, I would marry him!” How sweet is that! I know I always wanted to marry my papaw so it struck a chord in me when she said it.

We both stopped at speedway, hubs to get his energy drink, and he was going to get me a frozen coke (a treat on these hot days). He came out and had his drinks and nothing for me! I said out loud that I was angry at papaw for not getting me my drink, when out of the back seat I hear a voice tell me ” Meemaw, don’t yell at Papaw, because he gave you a flower and he told you that you are pretty.” How the voice of reason ccan come from sucha small person is amazing, isn’t it?

You see, about a month ago, my hubs gave me a rose in front of Audrey and at the time she said “Aw, Meemaw and Papaw you are in love aren’t you?” It became clear how much actions can speak to the hearts of even one as young as five. It reminds me of another time when another granddaughter, Brianna, drew a picture of my hubs and me and had a heart drawn over our heads. I asked what that was for and she said it was because we were in love.

So, for all of you out there thinking do as I say not as I do, rethink that one. It is far more powerful for your children (or grandchildren) to see your actions than your words at certain times. In our case, our grandchildren know that our door is always open to them, they will always be loved and feel secure in these uncertain times of today. We may move our home, but the love follows and permeates wherever we live. We are there if they need us and we try to give them spiritual  guidance without overstepping their parents. That is what we have been trying to teach them and I think it is getting through. Now, if only we could teach them…well, that is for another time…