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!!

Prednisone, my enemy and friend

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I am now getting into the prednisone arena where insomnia is happening. Prednisone is not a nice drug. It makes you swell up, gain weight, and have a terrible moon face. Don’t get me started on the irritability as well. However, it is also a friend in that it helps us to heal and get over a flare. It can save our lives when our body is fighting itself. So many good and bad things about it. The best thing is that it is better than not having it at all.

Rant against ignorance

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Ignorance is defined as : the state or fact of being ignorant : lack of knowledge, education, or awareness. (Merriam-Webster dictionaary).  Now to expound on this, let me state that in a normal world things are the way they are and in the world of lupus, things are not what they seem at all.

While I can excuse this lack of knowledge in some people, it is harder to do so in others who have been told the facts and have lived with them for years. In this instance, the ignorance is of their own choosing, their choice in the knowledge they have and choosing not to use it.  Are you still with me here? In other words, if you have been told, shown and learned that lupus affects everyone differently, why would you all of a sudden expect someone with lupus to , for example, begin an exercise regimen during a particularly bad flare? Making the person feel inadequate because they have extreme fatigue and cannot keep up with their normal routine and have to take naps is not only ignorant, but can also be dangerous to their health if they do indeed try to appease your vision of “health”.

This is not to say that exercise is out of the question entirely, but, due to tha nature of the disease, some days just getting out of bed is all the exercise a lupus patient can deal with. To decide that the person is lazy and needs to work out more, is, in fact, ignorant. Let me explain this yet again, because apparently some of those out there have not heard or learned from the past and medical experts on this subject.

The Lupus Foundation of America states (in regards to rest and fatigue) the following:

Getting the proper amount of rest is extremely important for people with lupus, especially during periods of disease activity (flares). Damaged and inflamed muscles and joints require rest to heal. Rest is also vital in reducing fatigue. Although everyone has his or her own particular sleep requirements, at least seven hours of sleep a night is recommended for people with lupus. It is also important to be aware that too much sleep isn’t healthy, either. Spending all day in bed may make muscles weaker, which can contribute to feelings of fatigue. Napping during the day may be helpful and even necessary when lupus activity is causing a flare. Try to allow extra time in your daily schedule for rest.

This will be different for each person. When I am feeling good, I will do things, as I am able, and feel a sense of accomplishment. However, when I am in a flare, I do not need to be belittled or made to feel like the few things I do get done are not enough. This makes me feel worthless and can actually make the flare worse. Depression only hurts me, not helps me.

Here is a frequently asked question and answer from the LFA website:

I was diagnosed with systemic lupus. Are there any do’s or don’ts with regards to exercise?

Having lupus can make the demands of everyday life challenging. When lupus is active, symptoms of joint stiffness, pain, extreme fatigue, confusion, or depression can make even simple tasks difficult, and sometimes impossible. And, because you may not have any visible signs of disease, the people around you may not realize how much discomfort and pain you are experiencing, or they may not know that you are sick at all.

You should not ignore the limitations that come with this disease. But there are steps you can take to stay active with work, relationships, and events that enrich your life. These actions and strategies can lighten the burden of your illness and allow you to lead a life of accomplishment and achievement.

Just like everyone else, people with lupus need to exercise regularly or engage in some kind of movement, and most people with lupus can take part in some form of activity. All exercise plans should be discussed with your physician or exercise specialist in order to maximize results and minimize possible harm.

Activities such as walking, swimming, bicycling, low-impact aerobics, certain types of yoga, Pilates, stretching, or using an elliptical exercise machine will strengthen your bones and tone your muscles without aggravating inflamed joints, while also helping to lower the risk for developing osteoporosis. It’s also a good idea to vary the exercises, so that different muscle groups all get a regular workout.

If you are experiencing swollen joints or muscle pain, you should avoid or at least limit activities that may be demanding on joints and muscles, such as jogging, weightlifting, or high-impact aerobics.

If you find that you tire easily when you exercise, you should pace yourself. The most important thing to remember is to not give up exercising, as muscles that are not used will quickly become weak.

Regular exercise and even simple low-impact movement will:

  • reduce or minimize stress
  • help to keep your heart healthy
  • improve muscle stiffness
  • increase muscle strength
  • help prevent osteoporosis
  • increase your range of motion

So, while exercise is wonderful, each patient needs to know their limitations and those around them should respect that.  As I stated before, some days just getting out of bed is a major accomplishment and on others, things can be as near normal as other people. When you are first diagnosed, learning these limitations takes time and learning to “listen” to your body. After many years of living with lupus, you are more aware of your limits and able to gauge how best to handle them.

I guess that is why I am so upset. I have had this disease for many years now, and I have coped with the challenges it brings. I have dealt with the ignorance of others, many of them family members, who think I am just being lazy and that sort of thing.  However, in my own body, I have this war, that rages daily. Right now it is roaring out loud, making me miserable and extremely tired. Along with that I am grumpy too. Sorry if that offends you. Sorry if you think you know what is best for me. Sorry you will not listen or learn so you can show me the respect I deserve and the assistance I need. Most of all, I am sorry that you choose to be ignorant.

Thanks for letting me rant… sometimes it help getting it out.

UGH

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Ok, so I admit it, lately I have not been blogging. However, the reason are many and also why I needed to be blogging again… a paradox but true. You see, I am in a flare and it has been particularly ugly. That being said, I have also been on steroids again to treat it.

I have been feeling pretty bad. Even with prednisone. No matter what I am taking. It sucks. Big time.

This flare is making me miserable and no getting away from it, it is a bad one for me. I cannot move at times and I lay down and sleep at all times of the day. I am having pain in my joints so bad I cry. I hurt when I drive, my ankle joint hurts. I really have downplayed it but this is a bad one. Add the misery of this heat and humidity, and I feel like never getting out at all.

Many of my fellow lupies have been having issues too, so I am not alone. This disease will not win!It can take my life, but not the living of it!

I know, I am complaining again, but if you felt like I do, you would be crying I tell you! Normal people have no clue how painful it can be just to get up and walk to the bathroom. Simple acts, like getting in and out of a car can bring excrutiating pain in the joints and therefore, are not to be done unless absolutely needed. Fingers throb in pain from the act of typing. The headaches from the prednisone tapering off are horrible! Now, add to that, having to try to act like you are not in pain, and you have my life.

My family is supportive in so many ways. My sons seem to cope better than my daughter, but they get it, all of them. Some days their mom is out and about and having a great day, and other days, you cannot get me out the door. Plans can be made, but only with the disclaimer that I may not be able to do them when they arrive.

I have to try to keep all the doctor appointments in line and make them but if they are not on my calendar, I forget about them. The memory is having issues, not like alzheimers, but all of my memroy, sometimes, odd bits will be forgotten, then reappeaar again. No rhyme or reeason. I hope the neurologist will get to the bottom of it. I have my emg this week, oh joy… and of course, the moving. Gee, wonder why I am so sick?

I am sorry if this is negative, but it is truthful and if I am not truthful, then I am lying to myself.

The bright spots in my life are my grandchildren. They give me a reason to hope, to believe, and to live. I am blessed to have them! I am thankful to Jehovah for them every day. My friends are another of my blessings. I have some outstanding people in my life who help me in so many little ways that they may not even be aware of doing it. They are my heroes and keep me fighting each and every day.

I guess I hope that if someone reads this and is one of the “normals” or people without lupus, they would see that life in our shoes is not pretty, or without substantial pain, but it is lived despite these things. I used to like helping others when I was normal, now I am thankful for those around me who give me help when I need it! I may look like I am not sick, but the war inside my body rages on and it is up to me to decide to have a good attitude or not. I cannot control the disease, however, I cannot let it control me. Yes, it hurts, yes, it is hard to live with, but I refuse to let it win!

I seem to be a little flighty tonight, but that is also what it can do to you. It is called brain fog, and it is a medical condition associated with lupus. This rapering down on prednisone is rough too. Forget about my fat “moon” face and the unwanted weight gain, the fact that the pain returns as you taper down is enough to make you cry! Then the mood swings from the drugs is there as well. It can be up and down and all around and if this is rambling, you can see how it can affect us! It sucks. Lupus sucks.

For today, I am choosing to be happy, and smiling, and loving. If I try hard enough, maybe the pain will give me a few little breaks and I can feel as normal as I can for a few minutes! If not, I will smile through it and wait until I see my neurologist and rheumatologist this week and see what they think… I will keep you updated!