The End of the Year

Wow. Another year about to come to an end. What a crazy year this was. Who knew everything that I would go through 365 days ago when this year was just beginning. Who knew the changes in store for me. It's not what I had planned for myself, but who would? Can't imagine someone saying "I want a chronic disease, and I want to take handfuls of medications every day, and I want to have to spend lots of time waiting in doctor's waiting rooms, and I want to give my blood to the vampire techs each month, and I want to have to change everything I love about my lifestyle". No, I can't imagine anyone would. But it's my life now. My new normal.
What have I learned?
I have learned that I have the most amazing family. I knew that before all of this, but I have an even greater respect and admiration for them. I adore my children. They are two of the most interesting people I know. And my husband is simply more incredible than I could have ever asked for. And it is only because of the three of them that I am as healthy as I am now. And my parents, both mine and his, are four of the most supportive people. I am truly blessed.
I have learned what is really important to me. Since I don't have the time I used to have (apparently we are not meant to use all 24 hours God gives us each day) nor the energy I used to have, I have learned what is truly important to me in this life and focus my energy there. And I don't even miss all of the "other" stuff. How funny is that?
Happy New Year! May the coming year be full of Health and Happiness.
Until next time,
Nicky

It's Me Again

It has been awhile since my last post. I wanted to believe that I didn't need this blog anymore. That I had gotten all of the stuff out of my head that was rattling around up there. But I realized this weekend that there is still lots of stuff up there. Some of it related to the Lupus. Some of it related to how the Lupus is changing my life. Some of it just relating to my life. So I'm back, writing away once again.

So I survived Memory Walk 09. I work for the Alzheimer's Association and am in charge of the local fundraising - awareness raising walk that happens here every fall. I think it is a little ironic that I am organizing and participating in an awareness walk for something other than Lupus. I almost feel a little guilty about it. Not that there are any Lupus walks in the area, or in the state for all I know. But I feel like I am cheating on myself and everyone else out there with Lupus because I have spent my time and energy organizing a walk for another cause. It's not like I have a plethora of energy available these days. Then again, it is part of the job description for which I get paid for. And I still need to get paid if I am going to keep my insurance and try to afford this damn disease for awhile. But I do still feel guilty. When I was up on stage during the ceremonies, with the thin wispy hair that is just starting to grow back and the fat prednisone face, and my long sleeves and pants on even though it was sunny and 80 degrees out, I felt like a liar and a cheat. I felt like everyone in the crowd was staring at me and thinking "why are you talking about Alzheimer's, you have Lupus". It was as if they were all looking right through me. It was a very weird feeling.

And I survived the event without a flare!! That means when I see the Rheum in a couple of weeks he will take me off the Prednisone. I'm down from 60mg a day to 10mg a day. He left me on the med through the event just in case things started to get a little rough. But I planned ahead, used my calendar and my lists and managed to survive in one piece. I had a great committee working with me who helped me feel like I really wasn't forgetting anything so I didn't spend my nights obsessing over the details. Actually, the event was more successful than I had expected which just blows my numbers for my 5 year plan all to hell. Oh well, I will deal with next year's numbers in January when I have to start thinking about the event again.

Guilt is such a weird thing. I feel guilty about so many things all because of the Lupus. Sometimes I feel guilty about not doing something. Sometimes I feel guilty about doing something. Sometimes I feel guilty because I don't want people to think I am using my Lupus to do or not do something. Guilt, guilt, guilt. It is even more annoying than the pain from the pleurisy.

Until next time,
Nicky

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