Hair today, gone tomorrow


In case you were not aware of it, lupus can cause hair loss. It usually happens when you are flaring or the disease is active. In my case, yes, I am flaring and yes, I am losing my hair. I am blessed with an abundance of hair so the loss usually does not show much. This time, however, I am really getting nervous. My hair is really getting thin. My mother in law said she is finding hair everywhere! I asked hubs tonight how bad it is and he said it is fine. Bless his heart. He would never tell me otherwise.

My thought is that if the loss continues much longer, I may purchase a wig or two. If it comes to that point, I might even shave it and be done. At least then my hair will all grown back at the same time. Right now, the way it is falling out, when it grows back it will be awful!

Vanity is a funny thing. I normally do not give my hair much thought. Yeah it is there, I brush it, I put it in ponytails, I let it curl up. This is strange. My head feel lighter somehow, like the weight of all that hair is going away. My hair is longer than normal right now and usually it bothers me really bad. It is not. Hmm, maybe this is a blessing in disguise. Maybe I am going to have less hair now and will not have to worry about all the things like before.

I know of others who have shaved their heads before their chemo. I am not on chemo, but if this flare continues, I may face the same dilemma. Oh well, not going to worry… the hair is here today and I will not moan its loss if it falls out tomorrow. I will just consider it another of those things to experience and move on forward. Not only that, I can get a wig or two and always have styled hair! Hey, there’s a thought!

No More Stress Please…I said please…


Ok, I know that I am not immune to stress…we all have stress. Waking up in the morning is stress. Eating food can be stressful. The whole world is filled to the brim in stress. I mean, we are literally swimming in it every moment of every day. Just once, though, I would like to say something like this…”Stress is not welcome here, go away!”. I know, wishful thinking indeed. So, bring on the stress wolfie…I can take it…. 

There are stressors that we get without trying at all. Here is an example… just because I have kids, it is a given that there will be things like car accidents, drama and such. Stress also does not magically stop when they are adults, the stressors just get bigger and more costly.

Our parents are aging too. It is that time of our life where we have to think about and act on taking care of our parents as they age. We are officially middle age and that is the bridge between raising our kids and taking care of our parents. These two things are loaded with stress, but it is a stress that we expect from the time we are aware of life and living.

Now to talk about other stressors. Having a chronic disease can by itself cause major stress because of the symptoms and the impact on your life and family/friends. When you get diagnosed with a chronic, incurable disease, you actually go through the stages of grief. Yes, as if the old you has died and the new you is trying to come to terms with it.

Today was not a good day at all. Stress began before I was out of bed. It has wound its way into most everything today. Maybe it is me, and I am bringing the stress on myself. I don’t think so.  While I am sure that I can shoulder some of the blame, I also allowed others to influence my day with their stress.

In the end, it was a day in which I feel like I should have just stayed in bed, covered my head and maybe no one would notice. It will never happen, but a girl can dream.

Seasons of Change


This time of the year in Ohio is one of the most beautiful. Trees are beginning to change the colors of their leaves, the air gets crisper and cooler at night, the breezes bring a welcome relief from the summer’s oppressive heat and people begin to look forward to winter. I love this time of year. This time of year, does not love me. Why?

When the air gets that lovely crispness in it, my asthma acts up. My allergies are in full swing as well. The cooler air and air pressure changes cause my joints to ache and swell up, and can make me feel out of control of my own body. I am a human barometer.

I used to make fun of my grandfather because he always knew when the cold fronts were coming through. He felt it in his bones, he said. More likely he felt it in his joints like I do. As a matter of fact, my fingers are aching as I type this. Yup, it is confirmed, I have become like my grandfather in this respect.

Science has conflicting ideas about the body being able to tell when a front is coming through. There have been multiple studies done, some proving it true, while others proving it false. In the lupus population, I daresay, we could make the scientists believers.

Personally, I know I feel it. I do not watch the news much (too depressing for a depressed person like me) so I do not know the weather forecast unless someone tells me or I happen to catch it in passing. My joints tell me when rain is coming, a cold front is coming, even snow I can feel in my bones. My feet are turning colors (purple) as well. I feel sure that there are many others out there who are experiencing the same thing. I feel that it is because we lupies are more in tune with the pain centers in our bodies and can feel the slightest changes more readily than a healthy individual would. We have learned to “listen” to our bodies.

So, while this time of year is delightful with its crystal clear blue autumnal skies and brilliant display of colorful leaves and cool crisp air, it is also a double edged sword to those of us who deal with these disease of the joints. Our mission then, is to try to find a balance between the pain and the beauty.  So here’s to all of us lupies out there, walking with the leaves crunching under our feet, and here’s hoping that you will get out there and enjoy the fall weather and try to not let it rule you with pain. Find pleasure in the simple things all around you and it will indeed help keep your pain in its place. Mind over matter, so to speak.  While you are enjoying the fall and all its wonder, please remember to not focus on the negatives, but ont he positives all around us. In this way, the big bad wolf cannot win!

For fellow lupies…


Ok, so I have complained a lot lately about a lot of things. Yes, I admit it. However, in my defense I would like to state that if you were in as much pain as I have been recently, you would be complaining too.

I finally did break down and call the doctor. I have an appointment on Monday. I will find out what we are going to do about all the things my body is doing to me, hopefully, and get some relief from the unrelenting pain. I also have begun the prednisone again. This time for a long term bout of it. I have had three or four short courses of it and it helps for a short while, but the pain rears its ugly head after a bit and it starts all over again.

This time, I am dealing with it on my own. I am not going to talk about it or discuss how bad it hurts because I think I have finally figured out that no one really wants to hear it. No one. I have had no one to confide in about it. So that is why I have been spouting off on here.

Please forgive me for doing this in the way I am doing it but this is how I feel. Pain, accompanied by depression, and an overwhleming sense of loneliness because I cannot talk about it even in the most benign way, to anyone in my household, even my family outside of the household.

My kids have had several crises this week which involved me being called and helping them out and dealing with that stress. Add to the mix, my husband who is delaing with his own demons and cannot stand to hear anything “negative” right now. Add yet another thing, getting my mother-in-law packed and putting her things into storage. Then getting our things out of storage and moved here. Painting, dishes, housework, laundry and a whole litany of things and I think you can see how I feel.

I did try to take a time out from life for one day and ended up having to help son out and watch granddaughter and help husband out as well. It was a bad idea, don’t know why I tried to do it. No sleep, and tons of stress.

I feel alone. I am depressed because really, I feel no one cares. I cry from the pain in my joints and the pain meds do not help.  No one knows I cry because it would “upset” them to see it so I go to the bathroom or to bed early and hope no one sees it. I am back on pred after workign hard to lose ten pounds in the last week, only to find that I will probably gain weight again while on it. Gee, do you think I am flaring? Go figure… enough said, I will adopt the stiff upper lip and put on my big girl panties and continue to “pretend” nothing is wrong.  Wish me luck!