Simple Things

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A lot of people overlook the simple things, the small things, each day. They are focused on getting that new house, getting that pay raise, looking far down the road. That’s not bad to do but in the hustle and bustle of working towards those goals, they overlook the simple blessings all around them. My disease has forced me to slow down, way down. It was a struggle at first to figure out how to get through each day. However, by this mandated slowing down, I found all those simple things, those everyday blessings that I had overlooked before. It’s amazing how you can see Gods hand in every little thing when you pay attention to the little things, the simple things. My disease may not be pretty but it has opened my eyes to all sorts of beauty each day in my life. For that, I’m grateful, because it has shown me all the things that really matter. Friendship, love, family, faith and life are just a few of these things. I ask you to slow down a bit and look around at all your blessings. You will be amazed! Trust me, I know and try to daily find things to be thankful for, to keep my focus on these simple things that truly are the BIG things! Have a great day!

Recent Events

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I am sorry for the absence lately but I have good reason for not being around. I have been quite sick lately.  Sick emotionally and physically. Not good at all. I have had deep depression and stress like you would not believe. WARNING: This post has many negative things in it. Read it at your own risk. 

First, our furnace went out. We are making it because we have supplemental heaters we are using and ifit gets very bad, we can sleep in our heated garage. Next, we found out we have to move. Our home we live in is being foreclosed and we are unsure of where we will live because of this. We don’t even know how long we can stay once foreclosure begins. Its not our house so we are only involved in the length of time before we have to be out.

The next thing upsetting me is my husband. He is binge drinking for days on end, then sobering up for three days only to begin again. I am avoiding him/as/much as I can because I tend to be his target of choice when he wants to get aggressive. He is also getting Ativan from someplace and the docs told him not to never take it again because he became addicted to it in the past. He says it helps him with his panic attacks. I say quit drinking and they will go away. I tell you, he will be dead soon if he continues.

My health has had several twists and turns too. I have had a weird type of thing happen recently. I was sitting in my recliner when I started to shake uncontrollably. No reason for it. Just horrible shaking that lasted for a half hour or so. I could barely talk but I was aware of it the whole time it happened. I did not see the doctor or go to the er. If it happens again, I am to go to the er. Scary. It makes me wonder if the neurological manifestations are causing this from the lupus. I will find out when I see my neuro next month. Oh joy.

Finally, I saw my family doc because of a tooth that broke off and became abcessed. I am on amoxicillin to control the abcess until can find a dentist who will not take all my money to pull it. You know, dental health is just as important as body health. Why can we not go to a dentist when we have no insurance? I called the dental school and asked about going there. It was going to cost me over two hundred dollars just to walk through the door. I cannot afford that. In this area there are not any dentists who take those without insurance. It is sad that dental health suffers because of this disparity. Why doesn’t someone get on that bandwagon? I mean, forget Obama care, get dental coverage for everyone regardless of income. Real dental health.

So now I am down to the final things going on. I may have aspirated the other morning when I woke up vomiting. I now have congestion in my lungs and my doc wants a chest x-ray to make sure nothing is going on. I will get it tomorrow because going to his office today just plain wore me out. Oh and I did not mention the migraines I have had because of all these weather changes.

So, it has not been good around here lately. Here’s to hoping things get better in the days ahead. I just cannot take much more. My favorite scripture is 1 Corinthians 10:13. Please look it up. It truly does give me strength to endure and hope for what lies ahead. I hope your days are filled with laughter and love. This post has not been pretty, but it is truthful.

Have you ever… had uncontrollable shivering/shaking with sudden onset and unexplained?

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This title is about a question I wanted to ask you all… have any of you ever just started shivering uncontrollably with no reason, such as fever, and if so, how long did it last?

Tonight as I was preparing to go to bed, I began shivering uncontrollably. I mean it began in my torso and spread out to the extremities. It felt and looked like a seizure except I was fully aware of everything around me. My muscles were contracting as well. Now that it is over, I am aching all over. Mine lasted over half an hour.

I see my rheumy at noon today so this will be on the list of topics discussed  My neurologist told me last time I saw him that I have evidence of neurological manifestations from lupus. I see him in April so he will be informed as well.

I am curious to know if anyone else has had this happen to them. Thanks!

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!   

Walk to End Lupus Now 2014

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Walk To End Lupus Now

Cincinnati, Ohio Fountain Square

May 10, 2014 More details can be seen by clicking on the links below as to the time, etc.

Here are the links to my personal page and my team page in case you want to help out. Donations can be securely submitted online. 

My personal page: http://walktoendlupus.kintera.org/cincinnati14/jenlynn401

My team page is: http://walktoendlupusnow.kintera.org/cincinnati14/beautifulbutterflies or click on it from my personal page.

Each year, our area has a lupus walk. Since they began, I have participated each year. Do I walk? Well, the first year I tried and made halfway. Yay me! Since then, I have resigned myself to being a volunteer and leaving the walking to those who are more physically able to do so. This year may be different but for an entirely different reason.

This year I have a wheelchair. I might be able to go if I can have people to wheel me. Wow! Who knew something so simple could change things in such a big way.My team has grown so much and this year we are determined to break over the 1k mark in donations. Technically we did last year but did not get recognized because it was done the day of the walk, not prior when it counted towards a plaque.This year, we are determined to do more and have more walkers too. 

Many of my former classmates have joined in the fight. Last year, four of them walked and raised money. This year, we are hoping to have more classmates join us. Last year, three of my grandchildren walked along with a friend of theirs. They have said they want to walk again this year. I am hoping to get my kids to walk too. My mom has walked for several years now and at 74, she is almost the oldest walker there each year. My mom is buff, and athletic. She can do a walk like this in her sleep. It’s not so much that she walks, but that she is there showing support for me. It really does help me knowing my family is supportive by participating. My grandkids love to walk. They do not raise money themselves, but I raise it for them and they all earn their walk t-shirts and other prizes!

Why do I participate? Well, for starters, lupus can be a genetic disease and I have 13 grandchildren, 11 of which are girls and three of which are of an asian genetic mixture. My grandkids have a better chance of developing this disease than most “normal” folks. It’s important to find a cure before they go through what I have gone through. No one wants their kids or grandkids to suffer with a debilitating disease like lupus. I am no different, other than the fact they are at more risk for the disease so I am proactive in helping in any way I can to find a cure. 

In case you didn’t know i already, I participated in the drug trial for benlysta, the only new drug developed in the fight for lupus in over fifty years that was developed FOR lupus. Until this drug, lupus patients were using drugs developed for other diseases, that helped lupus, and fighting a myriad of side effects from those drugs. This new drug is promising and really helped me while I was on the drug trial. Science is working on many more biologics in the same way to try to pinpoint ways to minimize  the effects of this disease and aid in the quality of lives for lupus patients. I am proud to have been in the drug trial and hope by helping out now, I am in some small way helping out the future generations of my family, and many others, not to deal with the damage this disease can cause.

I also walk each year because it makes me feel like I am in control of this disease in some small way. I cannot control much of what happens in my diseases course. However, by doing the walk each year, it gives me control to raise money and feel like a worthwhile member of society. I had to quit working several years ago because of lupus. I gained a lot of self esteem working and enjoyed working very much. When I was forced to stop working, it really hammered my self esteem and feelings of self worth. In some small way, doing this walk helps me to feel productive again. It gives me a focus to channel my frustrations and move towards finding a cure. While I might not live to see that cure, I can rest easy knowing I did SOMETHING to bring about it at least. 

Another reason I walk is for those who have lost their battles with lupus. I personally have known several who are no longer here. The reasons the lost their battles are different, which is normal in lupus, and vary from heart issues, to lung issues, to kidney issues to even suicide. Yes, suicide. I have known one person who killed herself because she could no longer live in  the pain she was dealing with. I do not judge her. She was so inspiring to those of us who knew her and yet she was overwhelmed by the pain f this disease to the point she felt she had no other choice. I get that. Totally. If it were not for my faith, I could very well have done the same. There are days when I feel that I cannot go on. I do though because I want to show others that they can win this battle. I might not in the end but the example I am setting for my grandkids makes a huge difference in why I fight each day!

Our walk here in Cincinnati is a BIG DEAL to me! There are many more reasons why but I just discussed a few. If there is a walk in your area, please get involved. It can give you hope and strength to meet others who know your pain, your challenges and give you more insight into this hideous disease. At the top of this post, you can see the date and place of my walk. If you are doing a walk, please comment your walk particulars and in that way others who live near you or I can join in the fight for a cure. Start just by going. The first couple of years I did the walk the only one who walked with me was my granddaughter Audrey. Over time,more family and friends have joined int he fight and last year our team had around 15 people on it! Not bad for the simple beginnings.  

Finally got my accessories!

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Well I am finally able to type at will again. When I ordered my new tablet, I did not realize just how hard it is to type on the screen. Up until I got the tablet, I had been using my iphone to type, of course that is a one fingered job being so small. I envisioned being able to use my hands more like normal typing. I was wrong. 

It is no easy feat trying to type on the screen of a tablet. I tried. It was not working for me so I decided to investigate the accessories I could get, for example, a keyboard. My tablet is a newer one and getting a keyboard that is bluetooth looked to be difficult. I could not find a “clone” type so I was left to order from the manufacturer. No big deal. Wrong. You see, to get the keyboard AND a case, it was going to cost me around $135. I went to walmart and checked out what they had and tried one out only to find that my 8 inch tablet did not fit any of the ones they had. I resigned myself to having to wait and moved on for a bit.

Now every so often I would look online to see if anyone had developed a keyboard just in case.. Finally, a few weeks ago, I found one that was a “clone: or generic one made exclusively for my tablet. Yippee! It was under $40 for the keyboard and a carrying case combo. I ordered it. It arrived a fee days ago and I absolutely love it!!

I now have a laptop, or at least that capability, as needed. My dell tablet is now a bonafide mini laptop and I am able to finally use the tablet in a more productive manner than before. I am so happy to find a solution that did not cost me an arm and a leg. I am able to type normally again. I was a secretary in my working/life so the ability to use a real keyboard is freeing me up to type quickly again. I am so happy! 

Now I can share daily again. I hope to do just that. I have so much to share and have been waiting until I could. That time is now! Thanks for hanging in there with me while Ihave been down. The times are getting better now. 

Great Blog on ESA

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I found a wonderful new blog that is a great reference and resource for family of alcoholics. It is called The Immortal Alcoholic and is written by the wife of an End Stage Alcoholic (ESA) who has first hand experience in being a caregiver of someone at ESA. Even if you don’t know an alcoholic, it is a good read into the realities of alcoholism, not the sugar coated way it is shown at times.

I have learned so much in just a few days from this blog. More than I ever learned at alanon meetings. I highly recommend it.

http://www.immortalalcoholic.blogspot.com

Home and Away

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Do you get out much in winter? Do you find yourself wishing you could?

I am pretty much housebound in winter. My reasonings are pretty simple. I have to be careful not to slip or fall thus breaking bones. I also tend to have worsening of pain after going out into the cold. I have raynauds too so I am more vulnerable to the cold. If you add in the migraines from the whole hot to cold, well, you can see why I am reluctant to go out.

I am fortunate in that I can maintain my spiritual health by phone and visits from those in the congregation. When it is time for my meetings, I call in and I can listen in and it feels like I am there. It is a loving provision and I am grateful for it.

It is easy to get depressed during the winter, and more so because of having to stay indoors. It is important to get sunlight into your day even if only briefly. The sunshine truly brightens your spirit and helps those prone to seasonal affective disorder by giving you the needed sunlight.

I admit to not opening the curtains much here but it is because if the sun is too bright, it can trigger a migraine. It’s a catch 22 for me so I try to dampen down the brightness so I can have the needed sunshine, just not too strongly.

I hope you all are faring well this winter day. As I write this, I am looking out onto a deep carpet of glistening snow that is sparkling because of the sun shining into it. We have around five inches out there right now and more forecast for tomorrow. This has been one of the snowiest winters in recent years. I don’t mind too much since I can watch it from inside my warm home. However, if you have to go out, please be careful. Have a great day!!

It’s Winter

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Well here I am again. Griping. Complaining. Hurting. Flaring.

This is one of my rants and scream kind of post. You have been warned.

The last four days have been rough. I am in so much pain. Everything hurts. I do mean everything. My joints are throbbing like crazy. My hair is still falling out. I am running a low grade fever. I feel like I am slogging uphill in sand up to my waist! It’s just hard to breathe even.

I called my doctor and I am on prednisone for a bit. The hair loss I am fighting by getting a new short hairdo. I am trying to live but find I am either in bed or the recliner. It makes it hard to function.

As for the “issue” of my husband, he is supposed to be going to Kentucky to visit his mom. He was supposed to leave today but decided not to. He hasn’t packed anything yet so I don’t expect him to go anytime soon. He enjoys smashing any peace I can find. Of course, it’s still daily belittling and bullying. If I rest he comes in and gripes about all the things I should be doing. However, if he feels sick, he does what he wants and heaven forbid I say anything. It’s a mess.

In the end, it just sucks lately. Pain. Flare. Life. Hope you all are pain free!!

Weather Forecasters

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I would like to preface this post by saying I think we need to overhaul the meteorology in this country. For example, last week we were told that we were getting snow here in the ohio valley  How much? Oh, no more than a few inches up to four inches. What did we get? More like eight inches! Who comes up with these forecasts?

Fast forward to today. Yesterday we were issued another winter storm warning with predictions of amounts from four up to twelve inches. Stores were packed with people getting supplies and an overall feeling of dread was present. As the day progressed, however, forecasters started slowly lowering snowfall totals. As of this morning, our winter storm warning has been cancelled and we only have an advisory with forecasts of one to three inches of snow. Seriously???

If I did such a horrible job at forecasting at any other job, I would be fired. How do they get away with inciting panic and then shrug their shoulders and say “woops”? I think its time to refine and shake out all the “forecasters”, and I use that term lightly, and hold them accountable. It’s just me though, so nothing will change