Finding Peace with a Chronic Illness

Why do I blog? To Share my Life of living with lupus to spread awareness.

Finding out I had Lupus was very overwhelming to me. It was bad enough going through a divorce, but this on top of everything else. I really felt like I just wanted to die and I started living my life by just going through the motions. I simply wanted to my life to be over. It was not easy for me to deal with the pain and fatigue amongst other things. I was planning on going to college for something in the medical field and well I felt like I had simply been shot down. When I was first symptomatic I was in complete denial because I did not know what my body was doing and how I was going to cope with the chronic pain. The hardest thing about the illness was the pain I felt everyday that did not end. I got up with the pain and went to bed with the pain. I simply did not know how to stop the pain and tried to run away from it. I complained to my doctor and it was like pulling teeth to get him to give me something for pain. I hated taking any kind of medication at all so this went totally against any of my beliefs. He did finally give me a medication called Ultracet which is a combination of Ultram and Tylenol. It worked for a short period of time, but the pain just simply fought against the medication. Here I was in the prime of my life and I was living someone else’s nightmare of living in constant pain day after day. I asked myself “Why Me” and I still have not got the answer to that question. Later, I started having extremely bad pain in my legs to the point that I felt like someone was torturing me with hot pokers. Once again, I wanted to crawl in a closet and die. So many doctors down played the pain in my legs and I thought that I was going to go out of my mind. After four years, I was finally diagnosed with peripheral neuropathy it was a relief to a certain degree. I finally had validation that I was not crazy like many doctors were saying. I can still feel the relief deep within my soul. It was then that I finally accepted for the most part my sickness. I still have my moments of depression, and anger, but I’ve learned to look for the positive things in my life. A simple smile and puppy dog kisses are worth a million dollars to me. You never really appreciate the small things until you have your life turned upside down from a chronic illness. I have said to a lot of people appreciate your health because you never know when the rug of health will be pulled out from underneath your feet.

I am submitting this as part of

I Hate Writers Block

I don’t seem to be able to find the words I need to write today. I seem to be having some kind of writers block and this is not fun. I hope it don’t last long because I love to write. Writing has giving me a way to release everything while dealing with lupus and life in general. In many ways it’s been my way out. It helps me leave the disease behind for a few moments I guess it just one of those days when I just can not write many words. I Just Hate Writers Block especially when it’s Your Own Therapy. Well I can only hope it passes soon. Some of it’s probably my pure exhaustion of living with lupus and chronic fatigue. I hate having very little energy.

Holiday Planning Time

Christmas is right around the corner for a lot of people. Deciding on what Christmas food to serve is on a lot of people’s minds. Living with lupus I am limited with the amount of things I can do during the holidays. I have to decide what things I can do and what things I can’t do. If you have a big family it can be fun doing some family projects together. Some families like to build snow men in the back yard or doing art projects together. It can be difficult finding things to pass the time when kids get bored. Celebrations offer a whole bunch of ideas of what to do during the holidays. They show you how to make snowman out of marshmallows. This can be a fun project for even the littlest ones in your family. The site shows a step by step explanation on how to create many different fun things to do for big and little kids of all ages.

Using Silver as a Dietary Supplement

Having lupus I’m always struggling to find something to help with my symptoms. A lot of things only help for a short period of time. Then there are the things that I think will help and they quit helping or I get some kind of crazy side affect. I just can not win for losing when dealing with my lupus symptoms. Each day its a struggle just to understand what this disease causes. Its a disease that the name wolf is a good name for it. For the longest time when I was first diagnosied I kept reading about a wolf when I searched for information about lupus. I finally researched it and found out lupus meant wolf in latin. What an irony that would be. My biggest name I call lupus is the plague. I’ve called it that for years and always will. Finding a dietary supplement to control my symptoms is overwhelming. Liquid Colloidal is a dietary supplement used to replace minerals we lose. I’ve taken vitamin D supplements for a few years to control a critical vitamin D deffiency. Collidal Silver has been a round for a while. Silver has been used for burn patient for a long time. When I was a Nursing Assitant the nurses would put silverdine salve on burns to heal the burns. It would amaze me how quick those burns were healed. The intreasting part is the cream would actually take away the sting from the burn. When I burn myself on the stove I wish I had some around to sooth my burns. I tend to be a clutz in the kitchen. True Colloidal Silver has been used as a dietary supplement by a lot of people. Finding a dietary supplement to control symptoms can be overwhelming at times. It takes a lot of research and a understanding doctor to discuss your health care needs.

My Favorite TV Show Army Wives

One of my favorite TV shows is Army Wives. I enjoy watching the lives unfold on Army wives. It allows me to get my mind away from the struggles with lupus everyday.Trevor and Roxy are a cute couple on the show. In last season they portrayed them as the ideal couple. This season they through in a dose of Trevor having an issue with pain killers. I hate seeing people struggle with addiction of any kind. Its something I’ve seen a lot of people struggle with it. It has its way of tearing an entire family apart in the blink of an eye. Army Wives is portraying the life of a family struggling with a family members addiction well. The drama of the Army Wives is something that everyone needs to see. Its a great awareness of the wars and how they struggle with life. Many people forget that our soldiers have the same struggles in life that we have.

Random concerns of a lupie

This weekend is almost over and it seems like it just started. Before long I will be starting school for my daughter. Its pretty scary were jumping into homeschooling her for the first year. She’ll be a freshman. It will be nice to have her around, but its pretty scary to me. She’s a pretty good student so I hope it continues as at home. It was a difficult decsion to make especially dealing with my sickness from day to day. If she wasn’t a motivated learning I thnk I would think twice, but luckly she is. The school in our area has a lot of problems.

My aches and pains have got the most of me today. I’ve felt like an 80 year old woman not able to move without my body feeling like its in traction. I miss my old body and my old abilty to function like normal, whatever that means. My shoulders ache and my legs are so sore. Sometimes my aches and pains get the most of me. Sometimes the only thing that keeps me going is tommorow is going to be better. Wednesday I have to have surgery to remove a cyst and it scares the hell out of me. I’m tring to be brave,but its easier said then done. Its a first time for me and I’m  tring to not focus on it at all.

Getting To Know Wick Davis of The Lupus Foundation of America

 I had the pleasure of interviewing Wick Davis of the Lupus Foundation of America.

What motivates you to continue to drive to the Lupus Foundation of America through all that Washington DC traffic?

Wick Davis Says:  First let me just say that people outside of the DC area have absolutely NO IDEA how awful the traffic is here. It is like nothing I have ever seen, and I’ve lived all over the country. It’s even awful on the weekends. I always chuckle when friends of mine from out of state complain about the traffic where they live. They have no idea. None! That said, my commute into DC isn’t too bad. I either take the bus, which is great, because I can sit and read, or relax, for an hour or so. I’m not sitting in traffic, wishing I was somewhere else. Or, if I don’t take the bus, I catch a ride with a coworker and her husband. Either way, I’m saving on gas, wear ‘n tear on my car … and most importantly, I’m saving my sanity!

What is your job at the Lupus Foundation of America?

Wick Davis Says:  My title is Director, Online Content & Community. So what does that mean? Well, it means a lot of things. I am responsible for all things pertaining to the lupus.org Website. Everything from creating new content when needed, to updating existing content, to maintaining the navigation on the Website; to ensuring the Website’s links are working, to making sure everything is spelled and punctuated correctly. Basically, my role is to make sure that users of our Website have a positive experience. I am also responsible for the Lupus Now magazine Website  and the World Lupus Day Website .

I host the monthly LFA Web chats. I am responsible for some writing content for, and the distribution of, our enewsletters. I write the LFA blog, “On the Road to a Cure,” . I am responsible for the LFA presence in Face book, and to a lesser extent, MySpace. I make sure that LFA PSAs (public service announcements) get posted to YouTube. I monitor the new LFA message boards. And since I have overall knowledge of all of these things, I try to make sure they’re all connected, and that people are aware of these great resources. For example, if we post a new PSA to You Tube, I write about it in the blog, and post it to both Face book and MySpace. Lots of cross promotion! I have to say … the one thing I really enjoy about my job at the LFA (and that I enjoyed while I was at the ADA) is the fact that I get to help people every day. Whether it’s providing timely and accurate information via the Website, or monitoring the LFA message boards, or hosting a Webchat, or writing the LFA blog … I enjoy all of that. I find it personally rewarding.

Does working at the Lupus Foundation of America have a personal connection to you?
Wick Davis Says:  Actually, it does not. Prior to my joining the LFA, I worked at the American Diabetes Association for almost 6 ½ years. A good friend of mine knew I was looking to make a career change and he had seen a position advertised on the lupus Website. He passed along the job posting to me and the rest, as they say, is history. However, after joining the LFA, I came to find out that a good friend of mine in Amsterdam has lupus. So she was excited that I was working for the LFA.

Dealing With The Nerve Damage with Lupus

My nerves in my feet seem to be back on the rampage tonight. I’ve got nerve damage in both of them. I went through 4 years of agonizing pain before the doctor put a name with the pain. I spent these four years telling my doctors about my symptoms. Most of them tried to down play the pain. It was so discouraging.

When the doctor that listened ran tests it explained a lot. I have severe nerve damage in both of my legs along with myopathy, which is muscle damage. It was a long road to finding out what was wrong with my legs. It was a relief in many ways. I was relieved that the pain was not in my head, as I’ve been told many times. I will be forever thankful to the doctor who referred me and the doctor who diagnosed me. I have peripheral neuropathy in both legs. My arms are affected by the nerve and muscle damage as well.

The Frustrations of Living With Lupus

Lupus affects each person differently. In the last 6 years, I’ve had a stroke thanks to the lupus. I have issues with my speech at times. The inflammation from the lupus can cause me to lose my ability to speak at times. At other times I can’t get the correct words to come out of my mouth. These are the most trying times. I have to figure out other ways to communicate. I’ve learned to not try speaking because I just get more frustrated. I usually find myself something to keep busy. I am thankful that I can type and write when I have these flare ups.

Trying to do more then a couple things at a time is more then I can handle. I’ve had to learn to do one thing at a time. On occasions I can do a couple of times, but anymore is too much. It did not affect me this way before I was sick. I was pretty good at multiple tasks at one time. I have to pick what needs to be done now and what can be done later. At times I can’t get any of the things done that I want to do. There are times I have all these plans to do certain things and end up going into a lupus flare. One of the most frustrating things is when I can’t get any of the things done. There are the times when I am so tired everything is a major chore. My exhaustion is something I can only explain by saying I feel like I have a large pile of bricks hooked to my back.

Get Your Walk For Lupus Graphic

Wick Davis over at the Lupus Foundation of America’s Blog was so nice to create a Walk for Lupus Logo for us bloggers. I can email anyone the link to send it to and the graphic so you can have your walk for lupus graphic for you site. Just leave me a comment and I’ll send you them both. You can see the graphic in the sidebar.