Help Melissa Find a Kidney

Melissa has a rare and chronic disease called Wegener's Granulomatosis Vasculitis. Her kidneys have been compromised by the disease. Please watch this video:

Stress is not good for Chronic Illness Patients

Although doctors tell us to watch our stress levels, this information about stress is mainly anecdotal.

Just recently I had an incident in my apartment complex that caused my stress levels to reach epic levels. I am not going to relate the incident here, but because of the incident I am still checking my doors, windows, and car. This stress level has made me nauseous and shaky. At this point I am more worried about my stress levels than about the incident.

Because I do know that stress can weaken immune systems, and because my immune system is at lowered levels because of the medications that I take, I know that I need to find ways to alleviate the stress. One thing I have done is pull out my Kindle so that I can go into another world. I used to do this in my teenage years to keep my world under control. Yes, escape seems to be a good option when I am this stressed.

Another escape option has been to watch my favorite cartoon Dark Wing Duck. I recently bought three DVDs with a few seasons of this cartoon. I have to admit that I laughed through the puns. Why, oh why, don't we have cartoons like that anymore?

Also, I would take a walk, but this is closed to me at least at this time. For the first time since we moved here, I don't feel safe to walk by myself. Instead my husband and I went to Scheels, an outfitter store, and walked through the products and displays. It is always fun to go there and we did end up buying stuff.

I have talked to others who have had stress problems. One of my friends bought herself a massage chair. I think that is a good idea. Another took a small vacation with her sister. And another friend trains Labrador retrievers.

Hyper-vigilance is really not a good state of mind for someone with a chronic illness. I hope that I can be vigilant without becoming obsessed.

FDA approves Rituxan to treat two rare disorders

The U.S. Food and Drug Administration today approved Rituxan (rituximab), in combination with glucocorticoids (steroids), to treat patients with Wegener’s granulomatosis (WG) and microscopic polyangiitis (MPA), two rare disorders that cause blood vessel inflammation (vasculitis).

Vasculitis in patients with WG and MPA can lead to tissue damage. WG mostly affects the respiratory tract (sinuses, nose, trachea, and lungs) and kidneys, while MPA commonly affects the kidneys, lungs, nerves, skin, and joints. Both of these diseases affect people of all ages and ethnicities, and both genders. The causes of these disorders are unknown, and both are considered orphan diseases because they each affect less than 200,000 people in the United States.

“This new indication for Rituxan provides the first approved therapy for these two orphan diseases,” said Curtis Rosebraugh, M.D., M.P.H., director of the Office of Drug Evaluation II in the FDA’s Center for Drug Evaluation and Research.

The rest of this release is here.

My analysis: As someone who has one of these orphan diseases I am pleased to see an effective drug for getting the disease under control. It would be even better if someone actually found the cause of the disease and made a cure. But, one step at a time.

Labs done for this quarter

One of the things that we don't like to talk about as WG patients is the time we spend at doctor offices and laboratories. And yes, I was getting my labs done this morning at the laboratory a few miles from the apartment. They even know me by name.

I usually have to give about two or three vials of blood and one container of urine. If you want dignity, then you'll find out soon enough that there is no dignity for those of us with chronic illnesses. I had to wait an hour before it was my turn.

I watched a poor woman in a wheelchair. She couldn't sit straight and had to be strapped in by her chest. At my guess she probably had Lou Gehrig's disease or extreme MS. She could barely talk. She couldn't control her arms or her legs and they seemed to move without her volition.

It is at those moments that I am so grateful that my disease is under control. I feel an extreme sadness that anyone has to go through that kind of illness. The dichotomy sometimes makes me feel guilty. But, when it came my time to have the needle pushed into my arm, I hardly felt it because I was thinking of the life of the other woman. It was over in just a few minutes.

And, my doctor will be looking for an upward trend on inflammation markers and cholesterol in the blood, and creatinine in the urine. If there is any change he will call me. If not, I get to go to the lab in three months and do it again.

A Flicker of Hope

The chapbook I put together last year "A Flicker of Hope: poems written by a Wegener's Granulomatosis survivor" is now on Smashwords.

The chapbook was reviewed by some good friends who have also published small literary journals for poetry. Plus I received a review on Smashwords that was thoughtful and great:

A survivor of a chronic illness, Ms. Bagley invites the reader into the experience of pain, the deliverance of the afflicted person into hyperconsciousness, and the mind-body struggle for recovery. As the poet obviously has experienced in her remarkable life, her poems reflect the triumph of the human spirit.
--Chantale Reve


It is just $0.99.

Indie Author

Just wanted to point out that I am now an Indie Author at Smashwords. You can see my post about it at Cyn's Doodles.

If you want to see what I have, here is my Smashwords page.

My next project is to format my poetry chapbook about having Wegener's Granulomatosis, and put it on Smashwords for free. I will let you know here when it is up.

Creative Writing

So guys - I am now changing my Creative Writing blog to Cyn's Doodles.

This blog will continue to carry health issues associated with Wegener's Granulomatosis and other chronic illnesses.

My Changing Life

This picture was taken of me at a family gathering in the year of my diagnosis. I have all the classic signs of high prednisone use: round face, round tummy, and dowager's hump. The good-looking man next to me is my hubby and caretaker.

During those first two years after the diagnosis of Wegener's Granulomatosis, he took care of me in every way he could. It was rough. Mainly because I was on high dosages of cytoxan and prednisone in an attempt to get the disease under control. The side-effects were horrible and he didn't know if I would make it.

But I have. The picture on the right was taken last year in the Northern Nevada Railroad Museum. I still have the round face, round tummy, and dowager's hump, but they have receded a little as the prednisone use has been lowered.

What I want to talk about is supplements. Yes, one of the things that my doctors have been talking about is that as someone with a chronic illness and kidney insufficiency, I need to take extra vitamins to keep healthy.

I started taking vitamin supplements from Herbalife and I have noticed that my skin is getting softer. Really, prednisone has caused a lot of problems with my skin. Also, I started using their weight loss products and now I can get into my size 16 pants. I still have a muffin top, so I won't be wearing them yet, but when this second picture was taken, my size 18 pants were too tight.

My doctors have told me that my energy levels had peaked because of the medications that I have to take. (imuran and prednisone) BUT since I started taking the Herbalife multi-vitamin and herbal concentrate my energy levels have increased enough that I am starting to walk two miles three times per week. Before I started, I had enough energy to walk across the apartment complex to get my mail.

So if you are interested to see what kind of targeted nutrition that these folks have check-out Wellness Store. Or if you are into the energy drinks, why don't you try lift-off? Lift-off Energy

Lift-off is an energy tablet you put into water. It gives you energy without the crash.

My life is changing for the better. I have more energy now to write, walk, and visit friends. Maybe these products can help you too.

As for you die-hard dieters, I lost ten pounds while on prednisone. It is almost impossible... I am trying to get down to my pre-disease weight.