Life is so interesting. The sleep didn’t get better right away, as a matter of fact it got to the point of where I went two full nights with no sleep. By Sunday afternoon I was so out of it and I started to become sick with a cold and had all the signs of having the start of a Lupus flare…
So I have slept pretty good, in the last week, mainly cause of Nyquil.
This flare seems to be a big one, it seems to have a lot of symptoms, some aren’t too bad, but others are painful. My lymph nodes have swelled back up and they are so painful. So back to square one.

Other than all this fun, life is pretty normal. I work at trying to take it easy but that doesn’t always work. David has now caught the cold I got, so I am waiting for it to come back my way .

Life has been incredibly overwhelming lately. Not in a particularly bad way or a good way, it just seems crazy. I went to my doctor last week to ask about the new Fibromyalgia drug. The one I’m on now has helped me gain a lot of weight in a short period of time and I really need to lose it since it is affecting my ankles. So the new drug isn’t out yet, but there is another drug I could try. So I am weaning off the first one & starting the second one. The first one seems to working its way out of my system fairly quickly and the second one is taking it’s time working into my system. I will be glad when this is over, and I really hope it works! But in the meantime I am being reminded of how I felt a year ago. I really don’t know how I survived all this pain and lack of sleep.
So that kind of catches you up to my health stuff. I am sleeping 2-3 hours a night- if I’m lucky. David & I bought a new mattress that we set up tonight- so I’m hoping that helps a little. It’s much better than the one we had.

Just had to share my laugh

So now I am going through life learning to accept the fact that yes I have Lupus. I now find it funny that any doctor I see (that is not my Rhuemy) assumes that whatever aliment I have is "Lupus". It was frustrating at first, but it's ok now. I am just going to start asking "if I didn't have Lupus what would you say?" I may not make any friends, but oh well, these doctors need to know that they need to be sure they can't figure it out before they blame Lupus.

What made me come to the realization? I went to the eye doctor and she did the whole exam and towards the end she said the vains in my eyes are very narrow and curvy, which is caused by Lupus.

So I have Lupus, I am going to live with Lupus and fight Lupus. I may get frustrated, I may not feel good, but it's ok. Life will continue whether my body wants it too or not.

It’s been awhile since an update. So here it goes. The flare seems to have leveled off. In the mean time I have been seeing an ob/gyn for other issues and recently had surgery to check out what’s going on and at the same time they did a tubal ligation. The reason I am telling you this is because the doctor found nothing… which means he gave me the answer to all my problems:

It must be Lupus.

I could SCREAM. I am SO sick and tired of this. I would like to go to a doctor and not tell him my medical history so they can actually trouble shoot instead of look once and assume. I know- I am making a claim against the doctor that he didn’t do fully do his job, however, I have been dealing with so much that it seems everyone blames Lupus. Lupus is like a terrible hang nail that you can’t get rid of… Your knee hurts? Oh it’s just that hang nail… your neck hurts? It’s that hang nail, sorry can’t help you. I am so terribly frustrated. I am fed up and done. I am ready to stop complaining, everything is Lupus related and no one can help or really cares.

Wow- that was a lot to poor out, but I guess I needed to say it. The bottom line is that it sucks to have it all blamed on Lupus.
I hope to stop my birth control which should help with the hormones, and I am hoping it lessens the flares I have in relation to the hormones. And I am now debating a break from the Lyrica. As I have said before, Lyrica can block your body’s ability to lose weight and I am gaining weight quickly. I am miserable and unhappy with my current body and I want nothing more for it to be manageable, but it means going off the one drug I feel is working. This is so incredibly complicated and frustrating I just don’t know what to do.

Update

Last night I came home from the Seahawks game. I knew I was going to pay for the weekend I had, I just didn't realized. I got home with head congestion so bad that I couldn't keep my eyes open. I broke down & took some nighquil, but it didn't kick in. I cried the pain was so bad. My whole body ached. Colds suck because it seems to me that they also feel like the flu, achiness, fevers, congestion, sore throat and such.

So when I woke up this morning I still hadn't slepted off the drugs so I opted to stay home from work. I have been miserable ALL day. My only hope is that MAYBE this is what I have been fighting the last couple of months & it has finally come to light so I can go away. So I am now going to shut my computer off cause my head hurts, and I shouldn't have gotten on it to begin with, but you know those withdrawls can really get to you!

Another update

My flare continues. It really sucks. I have been in and out of doctors appointments and nothing. My lymph nodes continue to be swollen and all my labs came back “normal” for me. It may be that I am just getting virus after virus and my body has just not had time to heal. I am so frustrated. I am back to not sleeping and I feel like my chest is going to explode. It is just so annoying.
So I continue to fight, continue to try and rest, continue to live life.

Wick Davis, who rights the Lupus Foundations blog asked that I post this on my blog & I am happy to participate...


50 Years Without a New Lupus Drug! What Does it Mean to You?
Share your stories with Congress and Encourage Researchers to Keep Up Their Effort

Thursday, November 20, 2008 will mark an unfortunate anniversary. On that date, it will be 50 years since the U.S. Food and Drug Administration (FDA) last approved a drug specifically to treat lupus.

A half century is a long time to be waiting for safer and more effective treatments for a disease that affects an estimated 1.5 million Americans and at least five million people worldwide.

We need to let Members of Congress know that they must provide more funds to conduct the basic research that pharmaceutical and biotechnology companies need to develop new treatments for lupus. At the same time, we want to express our collective gratitude to the hundreds of researchers and industry executives who have been working tirelessly for many years to bring scientific discoveries from the bench to the bedside.

So what does 50 years without a new lupus drug mean to you?

No one is more qualified to speak out about the need for better treatments than individuals with lupus who have no option but to keep using the old drugs that were approved for lupus when Dwight Eisenhower was still president and can have side effects worse than the primary disease.

How can you help? Share your story!

Please help by sending a two part email message to 50years@lupus.org as soon as possible but before November 20.

In the first part of the email, write a short message (about 150 words) that explains to Members of Congress what 50 years without a new lupus drug means to you. In the second part of the email, write a short note of appreciation that explains to researchers and industry executives how grateful you are for their efforts to develop new safe and effective treatments for lupus.

Please include your first and last name and your city and state in your email. If possible (but certainly not required), please also attach to your email a clear photo of yourself so we can personalize your message.

We will use your email message in several ways to help advance the science of lupus!


Deliver your message to Congress.
During the LFA’s Annual Advocacy Day, lupus advocates will deliver your story, and the stories of others, to policy makers in Washington, DC. Be sure to include your name and your city and state in your message so we can deliver your story to your Representative.

Feature selected stories on the LFA website. While we are not able to promise that we can post every message and photo we receive, we will review each one and post as many as possible to our website and in our blog so the public also can learn about the impact of 50 years with no new drug has on people with lupus and their families.

Share your "Thank You" notes with Researchers and Industry Executives.
Today there are hundreds of dedicated researchers and executives from pioneering biotechnology and pharmaceutical companies working hard to advance the science of lupus and to conduct clinical studies of nearly 30 potential new treatments for lupus. We want these individuals to know how much you appreciate their continued focus on lupus.

We Need Your Help Now! Act Today!

Send your message and photo today (or by November 20) to 50years@lupus.org. Then, on Thursday, November 20, visit our website to read the messages and learn how the LFA is taking steps to address this urgent problem.

Ask Others To Get Involved!

Please share this request with others who also have been waiting as long as five decades for a new lupus treatment! Together, we can raise awareness of this issue and urge our elected leaders to provide increased funds for research to find ways to develop safer and more effective targeted therapies for lupus.