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!!

Hair Loss In Lupus

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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

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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!!

Hair today, gone tomorrow

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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!

Hair Loss

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Well, just a short note here to tell of my recent hair loss. Yes, I am losing my hair again. It usually occurs when I am flaring and so well, it is falling out. I have such thick hair that normally it doesn’t seriously affect my looks. When it grows back, though, I end up with little short hairs mixed in with the longer ones. Ah well, such is lupus. Toodles all!