Itching Updates

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Since I first posted “This Infernal Eternal Itching” I have been amazed at how many people out there, with and without lupus, who experience the same thing. From what I gather, their doctors are at a loss as to why it happens. Mine are.

My itching comes and goes. There are times when I feel like I could scream because of the itching and then there are weeks or even months go by and I do not have it at all. It would be nice if some doctor somewhere could figure it out. For those of us who suffer, we find new ways to deal with it. Please consult your doctor if it persists.  They may not have the answer, but they could help you to get relief.

I will say that it is nice NOT to be alone with this. I used to think it was all in my head, and that I was crazy. I now know that itching seems to be consistent among some of those with autoimmunes. I hope that you each can find relief! I am trying to myself. I do have a question for those who experience this: Do you find it gets worse at certain times of the year? Personally, I don’t see a correlation in mine but it does raise the question.

Summer Heat and Lupus

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I am repeating this post because it is worth repeating this time of year.

 

This article I found online discusses the issues the summer season can provoke and offers some great tips on getting through summer overall. I know I have discussed how cold affects my lupus, but unless you have lupus, you may not be aware that summer heat and sun can also wreak havoc on bodies that are already off kilter. This information comes from the web :associated content on yahoo. I hope you will read it and use the suggestions it presents for  dealing with your lupus or your friend with lupus. It helps to educate others on the very real dangers the lupus patient can experience. Enjoy! I found it enlightening for myself and learned several new things.

Lupus and Heat

SLE or lupus and other autoimmune disorders often have higher incidences of flare ups during certain seasons, and for different reasons. Because of this, summer carries a high risk of danger to lupus and mixed connective tissue disorder patients in particular. Both extreme temperatures and sun exposure itself cause an already unstable body system to really go off kilter.

Because these disorders can impact the heart, kidneys and lungs, it is extemely important to try and prevent further damage to our bodies. Dehydration poses a much greater threat to us, so it’s important to remember to drink 6-8 glasses of water a day, and add other beverages such as fresh juice or refreshing iced teas.

Never go outdoors during the peak heat hours between 12 and 4 PM. Wear a big hat to shade your face, and an SPF sunscreen of at least 40. Learn to heed the signs of impending high blood pressure or kidney problems. If you begin feeling a tightness in your head, accompanied by a pounding pulse and often spots before your eyes, lie down immediately and call your physician.

If you stop urinating, or only are producing scanty amounts of urine, accompanied by intense headache, have someone drive you to the ER immediately. Do NOT try driving yourself, you may black out. As an example, I’ve been having periods of feeling as if I am going to pass out, something I’ve never had before. My husband drove me to the doctor who discovered yesterday my blood pressure is at a very dangerous 170/150. Needless to say it frightened us all out of our wits. When we asked why, she explained the combination of high heat, dehydration and constant pain from the still unhealed ankle breaks had cause my lupus to go into “crisis’ flare.

She, when asked for tips I could share with others, pointed out a few less obvious contributing factors. One is the light/heat from windows unless covered and draped. The damage from sun coming in an uncovered window is nearly twice as bad as being outoors itself. The same applies to flourescent lights. For some patients the UV light causes tremendous irritation for patients with SLE and Sjogrens.

Eyeglasses should be heavily tinted against UV rays. In Sjogren patients, who often suffer from dry aching eyes, the glasses afford them some relief and protection against the sun. Use eye moisture drops regularly to

stop the aching, stickiness and burning.

Swimming is an excellent way to ease fatigue and joint pains. During summers peak heat, try going very early in the morning, before 10 AM is perfect, or after 6 PM at night. Walking at a leisurely pace at those times is also a great way to get outdoors for a half hour or so. You might be surprised at how either of these things done two to three times a week, will improve your mood and your sense of fatigue.

Watch out for insect bites or other minor cuts or scrapes. Our systems are hyperreactive, making a small injury something to pay attention to. Especially if you are experiencing a flare up of your disease and being treated with Prednisone, Cyclosporin or other immunosuppressive treatment. Clean the area with soap and water, then lightly cover it with a bandaid treated with neosporin or other antibacterial agent.

Your appetite may be way off. So tempt yourself with small meals made up of fresh organic fruits or veggies, crackers and cheese or toasted english muffins with butter and fresh jam. If abdominal pain and diarrhea develop due to heat stressing, shower, wear something light and soft, and lie down in a darkened room. Take your meds on time, and notify your doctor if they are failing to control your pain or other symptoms.

Living with lupus or MCD doesn’t have to mean you have to avoid having summer fun. Like everything else involved with these disorders, it’s a matter of adjusting your schedule to adapt to the season, and to maintain a positive attitude. Relax, be aware of your body and don’t apologize to anyone for not being able to join in every single activity. And that means not doing things to harm yourself, just because you feel people may see you as lazy or somehow faking it. They don’t walk in your shoes, nor experience what you do. As I learned, much to my regret, is when you hurt yourself because of neglect or someones attitude towards you, you end up paying much too high a price. Enjoy life on whatever terms are safe and comfortable for you.

Why I Walk

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To be honest, last year I did not walk but still attended the event. This year is not looking too good for me walking either, but I will still tell you why I attend the walk. When I say I walk, I mean attending the event, since walking is not an option due to the disease activity right now. Please read…

I walk for my family, my children and grandchildren. They are at risk of developing Lupus because of me. I walk so they will not have to suffer and feel the pain of joints hurting and rashes appearing and organs inflamed. I walk for their future being pain free and healthy. I do not want this disease to impact them as it has me.

I walk for those who are unable to walk the walk anymore. They are fighting the best they can to survive each day with a smile on their face and joy in their heart. They do not take each day for granted but enjoy each day to the fullest because they have learned to appreciate each day they are given to survive. They are the warriors in this disease.

I walk for those who have passed on. This year alone, I have known of at least ten people who this disease has overtaken. There are many more that I do not know, but the sad fact is that this disease will consume many more loving people before their time. Those who have passed on are the inspiration to me to keep going, and not let the disease win if I can help it.

I walk for those not yet diagnosed. So many times it takes YEARS before a diagnosis can be made. With more awareness and assistance, we hope to cut this time down so patients can get the life saving treatment they need sooner rather than later. In some, this difference can mean life or death. It is vital to shorten this time!

I walk for those in such pain that they find daily living a challenge. Why must we feel bad when asking medical professionals for help in pain management? I truly believe that if more men had this disease, pain management would not be an issue. More women have this disease and as such, pain management can de a daunting challenge. We deserve to live as pain free as we can. We are not asking for something to get high. We are asking for medications that can help us to function on a daily basis as normally as possible. Why do we feel like drug addicts when we ask for help? Medical professionals need to understand that this is a chronic, incurable disease that can come and go and when we are in need of help, please give us the help we need. It is a small thing to ask for yet it is often a challenge because of the laws and the feelings of each doctor.

Finally, I walk so that others can be educated on this disease. Awareness is a key to funding, earlier diagnosis, treatment, and research. The more people realize that lupus is out here and more prolific that many diseases that have a higher profile, the more help we will get. Please take a few moments of your time and read about lupus. Talk about lupus. Join the LFA. Become proactive. For those of us with lupus, we need your help to get the word out. The normal people out there are the ones who can take the ball and run with it. They have the energy and time to be able to help those of us who can’t. Please go to

www.lfa.org and learn more about it.

If we can help just one person, will that not make everyone feel better? Join our cause and see what one person can do. The walk is just the tip of the iceberg.

On a personal note, I am proud of my granddaughter, Audrey, who has walked the walk since she was 3 years old. She WALKS and has raised money each year to help her meemaw. That, my friends, is love.

Walk for Lupus Now 2011

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Wow! It has been a busy week so far for me and it will end with the Walk for Lupus Now event on Saturday. Our team has raised $150 but as it stands right now, we will not meet our goal of $500. I am sad about that because we have met our goal the last two years. I am a goal oriented person and it does bother me. However, we have raised some and since our cause needs all the help it can get, anything is better than nothing! I have just been too sick to get out and beat the bushes as in the years past.

We have had some wonderful sponsors chip in to give us a good base to go with. Subway is an awesome sponsor with two different locations giving us freebies to give out! Kudos to them for their community spirit and giving!

Premier Innovisions is another local company that stepped up to the plate. The owner, Keith Turner, is my former brother in law and he generously gave so my granddaughter would have raised some money! His company is located in Franklin and does corporate IT management. More community spirit!

Chappy’s Tap Room and Grill in West Carrollton gave us a gift card good for $25 to give away as a raffle gift. I have eaten there, and the food is delicious and the atmosphere is great. Whomever wins this gift card will be getting a treat for sure!

Sonic in Middletown gave us ten peelie cards worth over $20 each! They did not hesitate when asked and gave freely! If you have ever been to Sonic, you know their food is pretty awesome and their milkshakes and drinks are amazing!

I have also talked with other local businesses that are willing to get their corporate offices involved and for that, we are grateful! This is only our third year and we are still building our corporate base so to find the willing businesses is a blessing! We are working on this now so we can get rolling on next years event!

We also found that JD Legends, the local bowling facility and concert/sand volleyball place has generously allowed us to book an event to raise even more money! We are booked for June and will be having a silent auction and a 50/50 drawing plus a fun night of bowling! I tell you, this community really does step up when asked to assist in something like this!

This Dayton/Cincinnati corrider can be proud of all the willing businesses who not only WANT to give but do so without any pressure. When asked, they do not hesitate but try to formulate ways to give us the assistance we need to make the event a success!

We are working on establishing new business relationships with corporations in the Dayton area and the Cincinnati area. Each year we will get better at this so please be patient with us. We have many ideas we are working on and hope to get this walk noticed on the national scale as well!

Our walk has more lupus patients in it than many others. This area of Ohio has many lupus patients who are suffering and living each day as best they can. I am one of those patients myself. Our walk is special because so many lupus patients come out and walk the walk! If others knew how hard this is, they would be helping out and not just ignoring us.

I guess that is it for me. I am proud to be a part of something that indeed does touch my family and many others. We are on our way and we will keep walking until a cure is found!

Why I Do What I Do

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There are a lot of people out there who may wonder why I do the things I do in promoting lupus awareness. The answer is as complex at times as the disease is. In answer to those that really want to know, I will try to explain it.

I have lupus. I live with it daily. It hurts. It is unpredictable. It impacts my life every day in some way. Now, to why I seem to obsess over it, as some would think, is simple. I feel better about myself and validated by studying it and sharing with others. It gives me a sense of accomplishment and allows me to vent my anger over the things I cannot control. It helps me, plain and simple.

Another reason why I give time to this cause is because it helps me feel like a viable member of society, because it is something I know about, and can help others with. I have already had to stop working because of it but it has not stopped me from wanting to have that sense of pride in doing a good job. Self esteem it is called and I could use some since not working anymore. To feel that, I promote lupus and help others understand about it. I ask organizations for grants and donations. I call businesses and discuss participating in the walk. It helps me to feel some control over lupus and to feel that I am doing something even if I am laying in bed and in my pj’s.

You see, I was always a go-getter, the first one at work and one of the last to leave. I enjoy working. I cannot hold a “real” job anymore because of the progression of this disease and the unpredictability of it all. I mean, who would want an employee who cannot say which days they can work and for how long?

In a perfect world, I could do a job from my bed if necessary. This world, unfortunately, is not perfect, yet anyway, and so I muddle on trying to keep my brain from rotting and pushing myself to do things that bring me satisfaction.

I have decided to work, as it were, at being an advocate for lupus. If that makes me a bad person, so be it. If people think I amd welling on it too much, so sorry. I live with it every day. They don’t. If what I do is causing them to think less of me, then they do not have to read. Plain and simple, I need to feel like I am doing something about this unpredictable disease and this is how I cope. Deal with it, or not, the choice is yours.

Sorry if this sounds harsh but I have been dealing with this for a long time now and it has been bothering me.  I live my life as best I can with each day and how it presents itself to me. I will not be ashamed of my feelings or my experience. Thanks for allowing me to vent.

A Simple “Thank You” Would Be Enough

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As the title implies, many of us do many things for others and yet do not hear these words. In some instances, we do not expect them. In others, it would be nice to know we are appreciated. We could do some small thing or some large thing, but no matter what, those two words can make a big difference!

The same principle applies to other thigns as well. For example, if you ask, pay attention and listen to someone else’s issues, it would be nice to have the same thing done in return. Like it says in the Golden Rule, “Do unto others as you would have them do unto you”. Sadly, it does not happen though.

Too often these days, people are too self absorbed to deal with anything other than themselves. It really is a shame. Life is found in many of the “thank you’s” in this world. Be reaching out to others and in return giving of yourself, you experience the wonderful feeling of empathy and understanding. If you do not, you find yourself isolated and apart from those around you.

How refreshing, then, to find other people who genuinely listen and care. They show empathy. They listen, really listen, to you and care enough to give advice and loving support in return. They freely give so that others may know it is worth living. These people are support groups, individuals who are sufferring from the same or different diseases than you, but give of themselves freely so you can cope with your issues today. In return, you do the same for them when they need it. You all know who you are! It is a rare commodity indeed today and for those who do this I have two words…”THANK YOU!” These people have made my life easier to deal with, given me hope, shared their experiences with me and shown me I can do this thing called life. Somehow, two words do not seem enough. Thank you all from my heart.

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!

Wonderfully Me

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I seem to be quick about the negatives in this journey with lupus, but for today, I want to share some good news. For two days now, I have been on a new medicine and for two days I have felt like a totally different person. I feel alive! I have energy! I feel light!

See, I told you…good news indeed! I am finally feeling wonderfully like me!

The reason for this is I had my appointment at the pain clinic and they are addressing the oppressive pain I have been dealing with and working on a plan of action to make me feel better. The first step is the new medicine I am on. The second step is a tens unit to target my pain and the third step is massage therapy. Who knew?

For those of you who are not aware, I have been virtually bed bound for some time now. I only got out when I had to, like doc visits and grocery. Even those were hard to do because of the overwhelming pain. Some days all I did was get up for the bathroom and the rest of the time was spent in bed. Not sleeping, just laying or sitting and unable to do much but feel bad. It is not a nice way to live.

I never wanted to see a pain doctor. I had heard all the bad stories about pill pushers who serve the addicted population and that only addicts went there. It took one strong willed lupie sister to talk me into going. Ok, scratch that, she threatened to come to my house and make me go if I didn’t make an appointment myself. I am so thankful for friends like that. She cared enough to do that and make me go into uncharted territory for me. I was way out of my comfort zone here.

I never wanted to go because in my mind, those who needed those things were weak and unable to be in control of their lives and take charge of their pain. I was taught growing up that you overcome pain by sheer willpower and grit. Well, how did that work out for me? I was reduced to being in bed most days because of the pain I was in.

When I finally got my nerve up to talk to my rheumy, he gave me a pain med that did nothing for my pain. After my friend and several other lupies I had talked to told me their stories, I decided to make the appointment. I kept the appointment and wow! why did I wait?

You see, I had done research and even posted articles on this blog about pain management. I was a fraud though, because even though I acknowledged that others needed stronger pain relief for a better quality of life, I would not do it myself because of these thoughts in my head I mentioned above. It is like saying “For you it is great but I am not that much in need”. WHAT!?

When your quality of life is impaired to the point that you are almost completely bed bound, how much lower do you want to go? So, I am here to say….if you are living in pain, get help! Do not think like I did and do nothing. I mean, unless you enjoy being in pain.

Some are fortunate enough that their doctors will help them in pain management. Others may have to seek out a pain clinic for their relief. The bottom line is how bad do you hurt? Today, I can honestly answer that even though I still have pain, it is in the range that I can function and get out of bed and do things! It is still there, just not as bad as it was.

I am thankful for those who gave me their honest input and lovingly pushed me to do this. Thanks is not enough! They have helped me to be able to live better, love much and give to others. The gift of these friends is immeasurable. Thank you all and you know who you are! 

Decisions, decisions

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Today was one of those days where you think about things in your life and how to change them for the better. It requires me to make decisions about a few things, but the one I will discuss here is my doctors. I adore my family practitioner very much. She is awesome and never makes you feel like you are stupid when you ask questions.

I am currently in process with my neurologist. In other words, he is still new to me but so far I have been impressed with his manner and decisions in my care. He is doing tests and making sure of the things and how to deal with them. I like that,

My rheumatologist is a nice man. He is also the doctor for my clinical trial I am on (benlysta, soon to be approved). I like him. There is one flaw in the equation though. He seems reluctant to help me in the pain department. So now I have to make a decision. I actually have had three different people tell me I need to go to a pain clinic. These people know me well and after discussing my issues with them, they agreed that maybe I need a new doctor. I really do not want to leave this rheumatologist, however, I may take the advice of these folks and go to a pain clinic for help with my pain.

You see, my rheumy is treating me for depression, but I am not sure he realizes that I am depressed because I am in so much pain right now. I mean seriously, in pain. If you add in the toxic fatigue and everything else, I am in a flare and need help here. I truly believe that if I got the pain meds to help with the pain, I may not be depressed. The pain makes me be a pain. When I am in pain, I am grouchy, grumpy, and depressed because I do not want to be in pain.

Now I need to make an appointment at the pain clinic and see what happens. I will update when I go.

Have any of you had issues like this before? I really could use some feedback from others who have experienced this as well. Thanks!

An Apple A Day

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When I was a little girl, my mom used to say, “an apple a day keeps the doctor away”. I know it is one of those wives tales and yet there is a ring of truth in it as well. If we eat good foods and not junk, we will be (for the most part) healthier than if we consumed junk foods all the time. I say this generally, not individually. Some people do all the right things, eating good foods, exercise daily, and avoid stress as much as able and yet they still get sick.

When we get sick, we tend to feel awful from head to toe. In this day and age, we trudge forward, and take our illnesses with us to work, school, the market and anyplace else we have to go. When the numbers of those ill reach enormous proportions, it should come as no surprise.

A generation ago, many people stayed home when they were ill. Of course, to balance this line of information it moves me to state that with all of oura new drugs and tests and such, we feel like we HAVE to trudge forward. We have the luxury of having all these medications that were not available not that long ago. A simple cold 60 years ago could mean death if it turned into pneumonia and worse. Some of the “cures” back then were barbaric by today’s standards.

There is a grain of truth in some of the old wives tales we heard growing up. My grandmother gave us a honey/whiskey/lemon concoction when we were ill with a cold or cough. Guess what? It worked. Once I had children of my own, I was reminded of this remedy when they were ill. In an effort to not harm my children, I asked my pediatrician about this homemade remedy and guess what he told me? He said that the honey/whiskey/lemon rememdy was actually very good and he said he doesn’t recommend it because some people have an aversion to the whiskey part of it. The funny thing is that most of the cough and cold syrups of the time had alcohol in them, but they were not aware of it. I confess that it did not hurt my kids, although my daughter used to go to the refridgerator at night and fake a cough so she could have her “medicine” long after her cough had gone.

One of my favorites was the farmers tale that says corn should be “knee high by the fourth of July“. I am not a farmer, nor do I know much about it, but I still find myself checking out the height of the corn around the fourth of July to see if the crops are well along like the tale says. Funny, most of them are so I guess that is where that one came from.

Here is one I hear most any day. It says that if you drop your food on the floor or ground, there is a five second rule and no germs will be on it if you get it before the five seconds elapse. The reality of this one is that the germs aare on there the second the food touches the ground. In five seconds, it is loaded with germs. This has been proven by a scientific study (yes, they study things like this).

Here is one that is actually dangerous. If you happen to get a burn, the wives tale said to put butter on it. My mother did this to me and my sisters. Her mother did it to her. In light of research and studies, though, it has been proven not only NOT to work, but can actually cause the burn to be worse than using nothing at all. Why people did not figure it out is unknown, but it has been passed down for years anyway.

When I was younger, another one I heard was that if you cracked your knuckles, you would get arthritis. Yet again, the research has proven that this one is false, but cracking your knuckles can cause pain and swelling and since it is not good for you, maybe in a convuluted way this kept people from the problems that can be associated with the practice.

I confess that there are many more out there, but the last one I will discuss is the one that says not to swallow your chewing gum because it will not digest and over time you will have a wad of gum in your stomach. I have heard seven years to digest. I looked this one up. On the web page link here, http://thelongestlistofthelongeststuffatthelongestdomainnameatlonglast.com/tales17.html

It states that chewing gum is digested just like regular food and in the same amount of time as well.  I am thinking of calling my mother to tell her the truth. Maybe not.

So, some wives tales have a ring of truth to them while others can be harmful. I say that if in doubt, check it out. I did and was amazed to find out the truth to some of these and many others. Happy hunting for you who like wives tales!