The Little Things

It's funny the how the little triumphs of our life change when we are living with Lupus. As of today, I am one medication less. One of my medications was up for refill but had none left. It was originally prescribed by my Primary Care Physician when I was in the hospital to help treat my extremely low blood count. When I was discharged he made it very clear that he did not want to see me for anything related to my Lupus and he was turning me over to more the skilled hands of a Rheumatologist for all things Lupus-related. I was only to see him for colds, broken bones, etc. His office called me yesterday telling me that they could not authorize the refill for the pharmacy without me coming in to see him. Yeah, right. I'm supposed to waste my $20 copay and 2 hours of my time to go see him for something he wants nothing to do with. I'm not even sure that he gets a copy of all my labwork. I politely declined and told my PCP's office assistant that I was seeing the Rheumatologist today and that I would have him fill the prescription. She didn't like that. She explained that my PCP had originally prescribed the medication and he would need to be the one to authorize the refill. Territory issues, maybe? Again, I politely declined, told her I would call back if my Rheumatologist was unable to fill the prescription and hung up. Well, Dr. F didn't refill the prescription. Instead, he told me that since blood counts were back to normal I no longer needed it. That means one less little pill in my AM box!! I am so excited! I can't wait until Friday which is the first morning I will only be choking down 4 pills instead of 5. Why does this feel like such an amazing victory??

Oh, the little things...

Until next time. Take care of you,
Nicky

Postscript to this post: The PCP's office called again to schedule an appointment. I politely explained to a different office assistant that I had seen my Rheumatologist this morning and everything had been taken care of so there was no need for me to come in. Her response? "Um... OK. Um... let me see if the doctor has any other questions for you." Then my PCP gets on the phone explaining that since he hadn't seen me in over about 4 months I needed to come in because he likes to keep on top of things. WHAT!!! You saw me less than 3 months ago when I was in the hospital AND you told me not to come see you unless it was something not Lupus related. I haven't had any issues that WEREN'T Lupus related. My Rheumatologist and Nephrologist are taking great care of me including solving the prescription issue so why do I need to waste my time and money to come see you? Yeah, um, no. Not happening.

Stuff I've Read - Lupus Q & A

In the months since my diagnosis, I have spent as much time as I can reading, researching, and exploring. Anything I could get my hands on so that I could further understand this thing that had taken over my body and I am forced to live with for the rest of my life. The second book I read was "Lupus Q & A: Everything You Need to Know" by Robert G. Lahita, MD, Ph.D and Robert H. Phillips, Ph.D. (2004, Revised Edition, Avery). The authors are a rheumatologist who is a Professor of Medicine and Senior Attending Physician and a practicing psychologist who previously served on the board of directors for the Lupus Foundation of America, Inc. Looking at their credentials I figured they might know what they were talking about. Plus I thought the Q and A format of the book could answer all my questions.

The book is divided into six chapters covering an overview of the disease, diagnosis, symptoms, treatment of lupus as well as medications and the impact of Lupus. Each chapter is made up of a list of questions and answers. The questions have come from the countless number of patients that each of these professionals have treated in their practices and their goal, as clearly stated in the preface, was "to address patients' very real questions". The authors acknowledge that they cannot answer everyone's questions as this disease is so complex and each person's case is individualized, but they hope that the questions they answered are the ones most on the minds of patients as far as their experience goes. I discovered that all of the questions that had been bouncing around in my head were right there in the book. Plus many more questions that I didn't even know I had yet. While reading the book, I found myself going back to reread answers to questions and have even referred to the book on several occasions since I finished reading it.

Lupus Q & A is a great little reference book. There is no personal "this is what worked for me" aspect to it. It is strictly clinical answers from experienced medical professionals, but written in language that is easy to understand even in the densest of Lupus fogs. Definitely one I will keep on bookshelf.

Until next time. Take care of you,
Nicky

Good Friday

Good News from the Kidney Doc! Lab results show protein counts are continuing to come down which indicates my body is responding to the Cellcept. That means I can continue with this course of treatment and not have to switch to the chemo option. That is a wonderful, wonderful, wonderful thing. I was a little (OK, a lot!) worried about having to switch. There were too many of the potential side effects that were just so scary. The one that concerned me the most was the sterility one. It seemed like everything I read indicated that after a certain length of treatment, the majority of women are no longer able to get pregnant. We've already discussed my "baby" issues. There is still no certainty that I will be able to try to get pregnant or actually get pregnant if I am allowed to try. But at least I know that my body is still able to function that way. Happy, happy day!

As the admitted information-aholic, I have read as much as I can find about Cellcept. Both of my doctors told me a little bit about it when I had to make my decision of which treatment option I wanted. But nothing in great detail. I scoured the internet looking for reputable websites where I could find more out about the medication. Thank goodness for technology. I can't imagine how many hours it would have taken me in a library periodicals room pouring over a microfilm machine. I also really appreciated reading the reviews and personal experiences that other patients of the drug posted. It amazes more and more each day how much I am coming to appreciate and depend on the experiences and opinions of others who are and have experienced what I am.

Cellcept (mycophenolate mofetil) was originally developed to be used in preventing organ rejection in kidney transplant patients and first approved for this purpose in 1995. It is now used in a variety of other organ transplant situations. Research in the early part of this decade showed its effectiveness in treating patients with severe Lupus Nephritis. More recent research is showing good signs of it affectively treating other symptoms of SLE. It is an immunosuppresant so it weakens the immune system and has a long list of possible side effects. But so do most of the medications that we are subjecting ourselves too. However, compared to some of the other options we face, the side effects of Cellcept are far less threatening and severe. I think I have been fortunate that the ones that I have experienced have been rather mild and relatively easy to deal with. I also think that some of them are starting to diminish the longer I am on the medication. I started in May, 2009 when I was discharged from the hospital at 500mg twice a day. In June, 2009 I moved up to 750 mg twice a week for about two weeks, then ramped up to 1000mg twice a day at the very end of June, 2009. The Kidney Doc has indicated that as long as I continue to respond favorably, she will keep me at this dosage. The two most significant side effects I noticed were trouble sleeping and tremors. I was also on very high doses of Prednisone which can also affect sleep. It is hard to attribute this side effect to one drug in particular. The tremors were very bad when I started on the medication, and then during the time that the dosage was being ramped up. Now that I have been at the same dosage for more than a month, I no longer have the tremors. I also noticed a little dizziness during the time the medication was being ramped up. But again, that has since subsided. I have constant pain in my back around the kidney area, but this could be from the Cellcept, the Lisinopril, or just simply from the Nephritis itself. My doctor assures me it is normal and unless the pain is really sharp or increased in intensity from what I normally experience, I am fine.

It still boggles my mind when I stop to think about the chemicals that I must put into my body every day. The regimine of medications and supplements has become so routine that I no longer really think about it. But when I do stop and think about the potency of some of these medications it is a little scary. The trust we as patients have put in our doctors and the researchers at the drug companies. But, like I said in the beginning, the test result numbers are going in the directions they need to be going so I will continue to put my faith and trust in all of these people I really don't know.

There is always a silver lining so I hope you find the Good in your Friday.

Take care of you,
Nicky

Books I've Read - Lupus: The First Year

So I am an already admitted information-aholic. I want to know everything I can about what it is that is taking over my body. Maybe I think that somewhere in all of that information there is that key piece of information that I need in order to control this thing and make it all go away. Like one of my many doctors isn't going to tell me if there was that magic thing.

This is the first book I read, "Lupus: The First Year. An Essential Guide for the Newly Diagnosed" by Nancy C. Hanger (2003, Marlow & Co., New York, NY). It's tag line reads "A patient-expert walks you through everything you need to learn and do." It was one of the only two books on Lupus on the bookstore shelf. It was just a few days after I had been released from my three week "vacation" at the local hospital, I just didn't have the energy to drag myself to the other bookstore and I was desperate to get something into my hands to start reading. The other option was "Lupus for Dummies" and as I just don't buy into all those "For Dummies" books I took this one.

It was an excellent choice to begin with. There was a great deal of information without so much information that it was confusing. And the book was written from the patient perspective so I think I felt like I could identify better with what I was reading. The book covers a broad spectrum of topics, subjects and ideas. There is just enough information that I felt like I had learned something, but it wasn't so detailed that it was overwhelming and I was freaked out. The sections were broken down into "Living" and "Learning" sections. The "Living" sections were more from the patient perspective and I felt like I was getting those day-to-day hints and tips I needed to learn to live with this disease. The "Learning" sections were more research and documented information which made me feel like the author, though just a patient with Lupus, knew what she was talking about and had done her research. The format really worked with where my mind-set was at that moment.

I appreciated all of the topics the book covered. Starting with what Lupus is including clinical definitions, signs, symptoms, through the "accessory" diseases that can come along for the ride, and then ending with an introduction to some of the alternative therapies. As a first introduction, I felt this book really eased me into this whole crazy world of Living with Lupus. I felt I finished the book knowing more about Lupus, understanding a little better about the lifestyle changes that I am going to have to make, being aware of what I could possibly expect to come in the future, and realizing that I still had a great deal left to learn. The book turned me onto the Lupus Foundation of America website, which I had not discovered yet at that point, but has since become a regular stopping point for me. The book also gave a shout out to the "Flylady" Martha Cilley. I've been "flying" with her for almost two years now and it was only because of her that I managed to get out of bed that first morning home. And it is because of her system that I manage to get through my days on the worst of the days without feeling like a total loser and let down to my family. She is a lifsaver and a sanity saver.

I've continued to read since then. Usually one book leads me to another. Currently, I am reading about our poop. Hmmm... I know. You're wondering about where that fits in. I'll explain -- as soon as I'm finished with the book.

Until next time, take care of you.
Nicky

My Little Notebook

My little notebook. It's cute. Colorful. Stripes on one cover, circles on the other. A couple of pockets on the inside. Brown elastic to keep it all together. A sturdy spiral-bound thingy. The first one didn't make it. The sprial-bound thingy wasn't sturdy enough for my opening and closing and opening and closing and opening again.

It's become my brain. Which is good thing and very necessary given the regular fog I'm in on any given day. I keep it all together in that little book and I always keep that little book with me. All my Lupus information is right there. And there is alot of that.

Have I mentioned that I am a bit of an information freak?

I've gone on information overload. So much so that I often can't remember what it is I just read. Ironic, huh? Reading so much that I can't remember what I read. But it's in there. Everything I've read about my diagnoses. There is a page for each. Everything I've read about my medications. There are lots of pages for those. Everything I've read about possible alternative therapies. As well as where I can go back to look up stuff when I decide to try that therapy. Everything I've read about recommended changes to my diet. Heaven knows I can't make all the changes at once. I'm having a hard enough time not eating red meat 5 days a week, plus leftovers on the other 2. It's all there.

Then there is the "doctor's section". A whole section just for my doctor's appointments. What they tell me, because I can't always remember once I leave. What I need to ask them, because I can't always remember from one week to the next what I wanted to ask. It's all there.

I'd be lost without it. By the way... where is that little book?

Until next time, take care of you.

Nicky