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


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!



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!   

Hair Loss In Lupus


Since I find myself experiencing this more profoundly than in the past, I looked up information on hair loss and thought I would share it. I also would like to say that I called my lupus chapter here in Ohio, and they helped me to find a salon that donates wigs in these types of situations and they also recommended calling the united way for assistance too.

Remember, the lfa is there for us patients as well as advocacy. I know my chapter in Ohio are rock stars in helping patients in many ways. Check out your area chapter and see how you can benefit from their services.

Now, back to hair loss. I found this information at: http://www.lupusny.org/about-lupus/newsletters/winter-2010/what-to-do-about-lupus-hair-loss. Hope it helps others.

What to Do About Lupus Hair Loss

Winter 2010

Most people don’t even notice the 50 to 100 strands of hair that they usually lose every day. With systemic lupus, the situation can be very different, with the loss of hair much more dramatic and noticeable.

Lupus hair loss can be caused by the disease itself, as the immune system destroys hair follicles, or by medicines such as prednisone and immune system-suppressants—in which case hair loss often stops once the medicine is stopped.

Hair may fall out in strands, or in clumps with the slightest pull, and sometimes it just thins out and gets very fragile and breakable.

If you are among the half of all people with systemic lupus who struggles with this problem, here are some ideas about what you can do about it:

Action steps

Losing hair can be scary, but it’s usually treatable and often can be covered up. It may take a while for hair to grow back—sometimes 6 months or more—but eventually it usually does unless it’s caused by skin (“cutaneous”) lupus that leads to a “discoid rash.” (Patches of thick and scaly red “discoid” rash can scar hair follicles and cause lasting hair loss, so be sure to talk to your doctor about your options if these develop. “Alopecia” is the medical term for hair loss.)

For most hair loss, you aren’t powerless! Here are some strategies to try:

Refresh your hair style. Ask a hairdresser for ideas to cover up bald spots. To make hair look thicker, try a cut that layers. When blow drying, try lifting hair up and away from the head. Or ask about dying hair to cover up bare scalp that otherwise might show through.
Consider hair extensions. If you still have some healthy hair and are just missing some patches on the sides (not the top)—and aren’t actively losing hair—consider hair extensions. Pre-made and custom-made extensions are available, and different ways to attach them (sewing, knotting, or adding in through tiny links are often best to avoid contact with chemicals, adhesives (glues) and heat.
Try a wig. These days wigs are so well-made that most people can’t tell you have one on. To start take a friend to just look around. You may well feel a lot better when you see what options there are!
Experiment with hair wraps, scarves, bandanas, accessories—tips are on the Internet! Enter “hair loss” along with the term “wrap,” or “scarf” in Youtube.com and you’ll get more free video demonstrations and ideas than you can handle!
Last resort: cosmetic surgery. For extreme and permanent hair loss, stretching the remaining hair to cover what’s been lost may be an option, or even transplanting hair from another part of the scalp.
If you have lupus and are losing hair, do NOT experiment with over-the-counter hair loss treatments. Talk to your doctor about treatment options.

What’s NOT to blame for lupus hair loss?

While it’s only common sense to avoid harsh chemicals or even very tight braids that pull on your scalp, you can’t really blame serious hair loss on a lack of vitamins, washing your hair a lot, or using hair colorings or other common hair products. Some hair loss follows the pattern that your mother or father experienced as well, and is totally normal.

Hair Today Gone Tomorrow


I have a question. I am losing my hair. I am. I told hubs and his answer was not to brush my hair anymore and not wash it. He even removed the brushes, until I found them. I have thick hair. Usually. However it is now noticeably thin. Scalp can be seen almost, I mean, I notice it more because I am not used to seeing it this thin. On to my question.

Have any of you lost your hair at some point in your lupus journey? If you did, did it grow back? I know we are each different but I haven’t been brave enough to research it lately because it is a hairy subject for me (pun intended).

On a related note, if my hair is falling out why isn’t my mustache, or eyebrows? I mean, fair is fair. Please share if you have had this happen. In over 20 plus years of having lupus, I have had thinning hair before but never widespread loss like this. Thanks!!

What now?


I’m frustrated. I have had this pressure in my shoulders and lungs for a week now. It feels like when you have surgery and gas gets in your shoulder. Except my lungs feel tight too. Any input appreciated. I just saw my rheumy last week before this started. I also have had bilirubin and white blood cells in my urine. It’s like I am falling apart. I guess I will see my gp on Monday if it keeps up. Sigh

Lupus Go Away!!


I began my day like any other. I woke up at ten, had breakfast and coffee, and sat in my chair to watch tv until I was fully awake. Here is where things went wrong.

I woke up at five pm. Yes, I fell asleep again. It was like I was in a coma. I would wake up briefly but couldn’t move. Like I was paralyzed. After a bit I would doze back off. Lupus brain fog. I hate it!!

So despite being back on steroids, I have slept this whole day away. I got up at five and made some soup beans and toast. I know protein is good for me. I also made another cup of coffee. My brain is still foggy. I I cannot believe it but I truly could go back to sleep again for the night. I guess for today, lupus wins. One battle for today is what lupus wins. However, I will win this war!!!

It’s funny how lupus does this.

By the way, I have a question for you all. Do any of you ever get little itchy blisters on your finger tips that burst and itch more? Just wondering.