Patreon? What is that?

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Hi everyone. I have some exciting news to share with you all. I have found a new place where I can share about lupus. It is called Patreon. I will be keeping this blog here, but will be posting videos and blog posts on my new site as well. I am new to videoing myself so I am hopeful it will turn out ok. In the meantime, here is the link if you would like to check it out:

http://www.patreon.com/Jenlynn401

This new venture of mine is for several reasons. First, many of my friends have pages on patreon discussing all kinds of topics. Second, I can generate a little pocket change for doing what I do, and third, no one else has lupus covered over there so why not jump in with both feet?

I am making posts public for now but in two weeks will change it to patrons only. I do not want you to think I am being mercenary. I just found out about this from a few friends and thought, hey, why not?

As I said, I will continue with this blog since it is my baby as well. Please check it out though and give me your feedback. You guys have been here for a long time. I appreciate each of you. I will see how this new venture works out. Hey, if it doesn’t work out, I can shut it down so why not? Thank you all and I hope you have a great day ahead!

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Black Walnuts

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In our little area of Kentucky, black walnut trees abound. For those who have never had a black walnut, they differ from english walnuts by a deeper, dark flavor profile that adds great taste to whatever they are added to. I love them.

Our back yard has two trees in it and our neighbors all have them in their yards as well. In our town, you can collect all that you can collect, then take them to a man in town who hulls them and then buys them from you. I found this out after my hands were stained by the walnut stain, which is dark brown, when I hand hulled the ones I did.

You do not get much for them, considering how expensive they are at the grocery. However, I got my husband on board and we get out daily and collect from all our neighbors yards as well as our own. I consider it exercise. bending, up and down, picking up all the lovely walnuts. I have actually lost weight in doing this! Plus, I refuse to let food rot on the ground, as is the case for most folks who have this tree in their yards. I feel good doing the collection of these nuts, and get a tiny compensation for doing it. I get paid 15 cents a pound after hulling. So far, I have taken down 90 pounds of nuts. Not including my husband…ha ha.

Our leaves are really starting to change here now. They are so beautiful. It is really nice living here among sweet folks who really look after each other. I have always felt at home here, mostly because most of my family is from Kentucky. My people are mountain people. People who eked out a living farming hillsides, hunting deer, sewing their clothes, and if they didn’t grow it, shoot it or make it, they did without. I am proud to be one of them. I am trying to learn these skills so I can pass them on to my grandchildren and keep the skills alive.

I know this is rambling a bit. I apologize. I am introspective today as I sit out on our front porch, watching the breeze blow the leaves, listening to the lawn mower mowing my neighbors yard, hearing my wind chimes play their delightful tune as they dance in the breeze. My flowers are still going strong out here. I mean, it is 85 degrees here today! The garden is still going, I am still getting banana peppers, green bell peppers, lettuce and soon carrots. I am pulling weeds and putting down wood chips and compost to prepare for next year. I am planning on expanding the garden next year by another six feet by twenty feet.

As for the lupus, I am still in some pain overall, which you all know is pretty normal. However, the energy levels I have now are fantastic and I feel the best I have in years. It has been a revelation how much my medications kept me down. I am using the supplements and food as my medicine, and getting outside, even if only to the porch, and I tell you, it is wonderful. As I stated in a previous post, I will not discuss which and what I am using because each of us lupies are different and what works for one may not work for another. If you are thinking of doing the same, please talk to your doctor, do your research, and be sure. I could have taken a turn for the worse. I didn’t but seriously, do your homework.

I will say that I have now added essential oils to my lineup. I cannot tell a difference with one exception. I am sleeping great, longer, and wake feeling more refreshed. I really don’t care if it is a placebo effect but I will take it. I am fermenting too. Just started learning about it in detail and even though I know some, I like to research it thoroughly before implementing it into our life.

My husband is a hoot. He told me yesterday that I was becoming a better person by incorporating these things into our lives. He loves to see me puttering around the garden and can see how happy I am now. He has finally come off soda and now drinks coffee or tea, and water. He drinks some gatorade too. He feels better too and has lost some weight as well. Funny how that happens with just a few changes in your routine.

I will go into some other important things we are doing that I will share with you in my next post. Until then, have a super pain free day everyone and get out and LIVE!

Seriously?

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*soapbox alert* *angry rant alert*

Seriously. No really. I applied for “extra help” from social security. Oddly enough, I got it! The gross income amount was recently raised so I actually qualified! Woot! Woot! So, the meds I no longer take will be affordable for me. I also was under the impression that they would pay some of my premium as well. I found out that I was mistaken.

You see, I called social security today to ask why I didn’t get the help for my premiums. My check this month was the same as every month. To be fair, I truly did NOT think things would go smoothly so I figured I would call to see what was up. If you have ever had to call social security, you understand that it can be a long process of waiting for the next available person. This time I was pleasantly surprised it only took ten minutes on hold! The nice person explained that yes, I was getting the assistance for my meds but the premium was another application with my state cabinet of something something. I was given the number. Social security also said I am qualified for premium help because it is the same income parameters as they have. Ah, now on to the next hurdle.

I called my state agency, where the phone tree routed me to a holding pattern that lasted 35 minutes. While the phone was on speaker I was on ancestry.com working on the family tree so it was OK. Anyway, the stressed sounding person who answered asked me about gross income for myself and husband. Once she had that information, she told me we made too much by about $100. I asked if they deducted expenses like rent, utilities, etc. and she said only if we were in the gross income range they have. She then said they could not help us and exited pretty quick.

OK, here are the facts…we are honest folks who worked and both became disabled through no fault of our own and had to stop working. We barely are over the limit income wise. However, if we separated we would BOTH get every kind of help available including food stamps and other assistance. Because our combined income is barely over the state’s limit, and we won’t lie, we cannot get much needed help.

Once again, seriously, we have to just deal with it. It upsets me because we are not riding the system, we both worked for what we get! I guess that’s why. First our premiums went nuts in January causing my check to be almost halved (thank you Mr. Obama), and once a small chink of light showed up, now it’s extinguished.

This world is crazier by the day. That’s my rant for today!

Family Loss

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On Saturday our family had the annual family reunion. Husband and I could not attend as we had visited Ohio earlier in the month. Our cousin was in charge and she always does a great job.

The day was a beautiful day and my mother in law and sister in law had gone up to attend. My mother in law and her remaining sister are the matriarchs of the family that are still here with us. The others have all passed away. So, they were attending.

My husband and I spent the day at Fort Boonesboro in Winchester, Kentucky. It was the festival commemorating the siege at the fort with reenactments. It was a lot of fun! One of my husbands ancestors was in the fort at the time of the siege.

We had a wonderful day and when we got home my phone went off with a message. It was my sister in law telling us that my cousin, who was the one who organized the reunion, well, her husband had unexpectedly and suddenly passed away. He was 55 and recently retired from a life of service as a fireman. He was the captain of the fire department. He had been unwell so he stayed home and my cousin was at the reunion. She received a phone call telling her that the ambulance had been dispatched to her home. She left immediately. You see, the ambulance is part of the fire department on our hometown so they knew him well.

It seems that she got to the hospital and he was talking and such, then took a turn. We were told they did cpr for almost two hours on him. You see, the staff at the hospital all knew him from ambulance runs he has done while a fireman/emt. He was one of their own.The family reunion, in the meantime, was shut down and everyone went to the hospital.

After he was pronounced dead, the funeral home was called. However, they did not come get him because the whole area had heard already and the ambulance from our hometown arrived and they transported him to the funeral home. In a caravan of fire trucks, police cars and all, he was transported to the funeral home while other fire trucks were along the way with their ladders out and saluting the caravan. Traffic was stopped. It was an amazing sight.

If he had not been gone, he would have loved it all! This cousin lived his dream, he always wanted to be a fireman and he had given his career to being the best one he could be! The only reason he retired was he had gone into kidney failure and had to have dialysis. Otherwise, he would have still been working. He had proudly served his hometown for over 25 years and was a fine example of a truly wonderful civil servant.

He was laid to rest today. They carried his coffin in a fire truck to the service. The most poignant thing about the whole service was when the fire department presented colors and the dispatcher called roll call and called for Captain Abston. Three times. Then stated he was not responding and end of his watch. I cried like a baby. There were other times just as meaningful but the end of watch, given live, is a reality and it really touches my heart.

These people take an oath to protect and serve their communities. They are a special breed and I am in awe of all they do. I certainly am a better person having known Tony, and know how very much he loved his family. He will certainly be missed by his town, his colleagues and more importantly, his family. Until the resurrection occurs, when I will see you again cousin, I say rest in peace.

 

Blood Test Results

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I went for fasting blood work on monday.  Happens more than I care to say but this time it had been awhile since the basic things had been checked. You know the drill… no coffee, drive to lab, take out half my blood, then back home.  This time I had company as my husband had to have fasting blood work too. Now it was two grumpy coffee drinkers not having their morning coffee and driving to get blood drawn. Ir was not pretty.

We arrive at the local hospital to find that our muffler had fallen down and was dragging under the car. Oh joy! Two grumpy uncaffienated people, with a muffler dragging under the car, and getting blood work done. The day just keeps getting better.

We went in to the hospital and had our blood work drawn, went out to the parking lot and tried to find a way to tie up the muffler. A nice lab worker found us a wire hanger but husband decided to use his show string. It is tied up and off we go. Now, we live about two miles from the hospital, but it is not a straight mile by any means. We made it about half a mile before we had to stop to try something else. At this point, a sweet good samaritan came over and not only helped us tie the muffler up, he had all the things to do it.  We thanked him and drove home.

We had not been home but about two hours when the phone rang. It was our family doctors office, never a good thing just after blood work is done. I answered and found that it was me, my results that had come in so far, were not good. Hm, go figure. The biggies had not come back yet but my SED rate was elevated. According to the range of good, it can go as high as 20. Mine was 55. Yeehaw! So, my body has inflammation going on.

Let me state here that my back went out a few days earlier so I am assuming that is the problem but with lupus you never know for sure. My cholesterol was a tiny bit over the line but not too bad. Watch my diet was the advice given. Ok I can do that.

I am still waiting on the RA latex to see what my ANA is along with a few others. I cannot wait.

So, husband gets his back and for the first time ever, his cholesterol is high. This is a new development. He always has low cholesterol. So, diet for him too.

So far this is all we have heard that has come back so I guess we will see. The good news is my B12 is great so I can most likely stop taking a supplement for that.

There you have it, the latest in this lupies world. Have a great day everyone!

Lupus, lupus, go away…

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Have you ever wished that lupus would just go away? I do, most days. I wish there was a cure. I wish for no more pain. I wish for no one else to struggle on those bad days to get to a good day. Most of all, I wish it would go away forever!

Lupus is such a complicated disease that it is hard to describe its effects on a person. While one patient may experience kidney issues, another may have issues with their joints and another with their eyes and so on. It is hard to pinpoint the nature of the beast because it is different in each patient.

The general take from the medical community is that they treat what crops up. Wait and see. They feel that it is the only way to treat it since each patient is different. For example, if you see your doctor with joint pain he will treat you for the joint pain. Nothing more. However, if he were to check your blood work, he might find more important things to address than your joint pain. It is like a catch 22. So, what to do?

I do not have the answer. I just wish that we could find this cure that will help us all.

 

Winter Is Coming

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I am trying to think positively about winter this year. Winter has usually meant pain for me and being house bound more than outside. This year I have decided to think more positively about winter. How? Let me tell you…

I enjoy crafts. Many different crafts. Instead of being in dread of winter, I am going to focus on my crafts and the things I can do with them. For example, I have a new sewing machine. I want to get back into quilting again. It has been a long time but I am truly excited to think about doing some more quilts.

I also enjoy scrapbooking. I have a bunch of pictures needing to be scrapped and I plan on putting good use to them this winter. I also need to print out new ones to scrap as well.

I crochet too. Nothing fancy like my sister does, but I have a queen size blanket I have been working on for several years now and I can work on it as time permits. I like to crochet while listening to a program on tv. Time passes quickly and more rows are added with hardly any effort. I also want to try making fingerless gloves for me for winter. My sister made me a pair and I am modeling them after the one she made for me.

I am also planning on working on my skill set of self sustaining skills. I love several you tubers who have helped me to learn about gardening, canning, and homesteading. Just keeping my mind open to new things keeps me from stagnating over winter. Plus, it gives me new ideas for spring! For instance, I already have a diagram of my garden for next year based on information I learned from this years garden.

At some point in winter, I will start my seeds for next years garden. I am learning the skill of seed saving so that next year I can grow plants from this years plants. Cilantro anyone? I have saved seeds from beans, tomatoes, cilantro, peppers, onions and I could go on. I will be growing potatoes next year too along with garlic and more onions. I will grow what we eat.

In closing, I always viewed winter with dread. However, thanks to thinking positively, I am now looking forward to the season and all the exciting things it holds in store! What are some positive things you look forward to?