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

Flare - Definition Please

Will someone please explain to me exactly what a Lupus Flare is! I have read about about them in the brochures and books I have read, I've read about them on the various websites and blogs that I have explored, but I still don't know what it is or how I know when I am having one. Someone please explain.

Before getting admitted to the hospital a few months ago, I would say that I was full on in a Lupus Flare. I had the butterfly rash across my face, I had a rash across my back, hips, chest, neck and arms (with the scars to prove it), I was constantly running a fever, joint pain in my legs, hips and arms, hair loss, and extreme fatigue. By the time I got out of the hospital the rashes had subsided as had the joint pain. But I was still losing my hair, was extremely fatigued, and was experiencing the worst chest pain from the pleurisy. Now, almost three months later I am still experiencing the worst chest pain from the pleurisy, though some days it is worse than others. I think the hair loss has finally started to slow, though the growth rate hasn't overtaken the loss rate quite yet. My energy levels are good, though I find myself worn out by the end of the day. This seems to directly coincide with the fevers. The days I have really worn myself out I usually end up with a fever and even sometimes flushing in my face and neck. So am I still "flaring" or is this just my new "normal"? Someone please help.
Take care of you.
Nicky

A New Level of Guilt

I have been battling a great deal of guilt since my diagnosis. Guilt about not being the wife and mother I should be because some days I am just too tired. Guilt about the lifestyle changes I am having to impose on my family (though many of them are good for their health too). Guilt about the financial burden that my medications and doctor copays are putting on our budget (never mind the hospital bills that are starting to arrive in the mail). Guilt about how my disease may affect the plans my husband and I had for the future. And now a new level of guilt -- grandbaby guilt.

I have two wonderful children who adore my husband and whom he adores. I love watching their relationships develop more and more each day. He is slowly getting used to coming to bed and finding them sprawled out on his side of the bed while we are reading and they are getting used to going directly to him to ask for something instead of using me as a mediator. I love to watch the three of them together. It makes my heart melt. But my husband and I had talked before we got married of having kids. My children's father is a very active part of their life and my husband realizes he will always be the "step-dad" and not "the dad". I think he really wants that opportunity to be "the dad". We just recently celebrated our 1st anniversary and probably would have started talking about getting pregnant soon. Until this. Now we have to take the time to treat the Nephritis and get my kidneys working better before we can even consider thinking about possibly contemplating having a discussion about getting pregnant. Even then, there is no guarantee that we will be able to try, and there is no guarantee we will be successful. My husband is wonderful. When I asked him one night if he was upset or angry about possibly not being able to get pregnant he said "no". My health was his concern and we were going to do nothing that would jeopardize that. We've got the punks, and the dog and the smelly cat and as long as I was around to enjoy it all with him, that was all that mattered. He makes my heart melt. But I still feel guilty that I may not be able to give him something that a year ago I promised him I would. Then yesterday came and a whole new level of guilt arrived. Our friends had their baby.

Mrs. F and my husband's family go way back to when they were kids. Mrs. F is like one of my MIL own kids. Whenever Mrs. F's niece and nephews would come for a visit, Mrs. F would always bring them over to my MIL's house (they live only two houses away from each other) to visit and play. You see, my MIL is dying for grandchildren. She wants grandchildren in the worst way and this has been no secret since my husband and I started dating. Her daughter and SIL have been married for many years but want absolutely nothing to do with having children. This has been clearly stated from the beginning of time apparently, or at least as long as I have known them. Her older son doesn't date much. He is a little stubborn and set in his ways and just hasn't quite found the right woman who can keep him in line. I think this might take awhile for him. That leaves my husband. He is the one that is supposed to provide the grandchildren. Even his brother and sister agree. A family joke that was started before I entered the picture.

So now I find myself feeling the guilt of not being able to give my MIL grandchildren. Is this wierd? I understand the guilt of not being able to give my husband children, but my MIL not getting grandchildren? Where did this come from? Now she is going to see new baby F all the time and while he is practically part of the family, he's not her grandbaby. I should clarify that nothing has ever been said to me about my role in providing grandchildren, or when we are going to have them, or even if we are going to have them. The joke simply points out that it is up to my husband to provide the grandchildren. Now he may not be able to and it is all my fault. And we won't know if he is able to for at least 2 years (though I am shooting for a conversation with the docs in 18 months). I don't need this guilt. This SELF-IMPOSED guilt. I'm doing enough of it already and now I feel like I'm failing my MIL in addition to my family. (Yes, I have perfectionist issues.) She is such a wonderful woman, so loving and giving and kind, that I just can't bear the thought of disappointing her, too. I can't bear the thought of her having to accept that the only grandchildren she is going to have belong to someone who is not her child.

This whole Lupus thing just keeps getting more and more difficult. I keep thinking that the more I read and learn and study, the easier this would get. Nope. Just harder. Some days I just want crawl back under the covers and pretend I'm not sick. But then I look at the clock and realize that it is time to my medications, or visit the vampires at the lab for my bloodwork, or reapply the suncreen even though I am wearing long sleeves and a hat. Nope. No pretending it doesn't exist. Until next time....



Take care of you.

Nicky

My Future - Is There One?

This weekend was a rough one. The pain from the pleurisy has been really bad the last five days. And the urinary tract infection and the heat have really wiped me out. I just haven't had the energy to do much of anything past the necessary basics. I pretty much hung around on the couch or my bed most of the weekend. Since there was nothing good on TV, it gave me a lot of time to think. Mostly about my post from the other day. How does a person with Lupus look at that future?



For years I have wanted to own a Bed and Breakfast. Since the first time I stayed in one twelve years ago I have thought it would be the most fun thing to do. When I met J he was cool with the idea with a few slight modifications. After some thought, I decided I could live with his modifications as it still meant I would be living somewhere in the mountains away from the city, I would still get to try my hand at getting "off the grid", and I would still get to meet new and fascinating people every week and entertain them in my home. (The funny part is that I hate breakfast. Outside of a bowl of cereal, I prefer to eat breakfast foods for dinner.) I have joked that my second career as a Bed and Breakfast owner will begin the day after my Baby Girl graduates from high school and I am already counting down the days. She's not sure how she feels about this since she is only getting ready to start the 5th grade. You can see I have some time to plan. I guess I really started thinking about it this weekend when I was complaining about the heat and wishing I was already in the mountains.



Baby Girl graduates in 2017. My life as a Bed and Breakfast owner should begin then, but will it? Will I be able to follow that dream? First I thought about the medical care. Medical care options here are a mixed bag. LC is a large enough town that we are starting to get some of the latest technology but there really aren't many options to chose from with what we do have. If I hadn't ended up in the hospital I would have had to see a Rheumatologist and a Nephrologist three hours away in ABQ instead of being able to see one here. I currently have to see each of them at least once a month along with a round of lab work. Up until a few months ago I wasn't sick, so I only saw my Gynecologist for my annual exam. I figured I could handle traveling a few hours if necessary for this one appointment. If I started to feel a cold coming on it was lots of fluids, chicken soup, bed rest and maybe an OTC, but never a doctor. If I still have to see doctors on such a regular basis, is moving to the almost middle of nowhere a viable option?



And then there is that whole health insurance thing. My insurance right now is crazy good. I will have to give that up if I leave the company. Is that something I can afford to do? Um... no. Would I be able to get other coverage? Um... not for what I pay now. Health care is the big topic right now, especially as Congress gets ready for the summer break. I understand that we have no idea what kind of nationalized / socialized/ reformized health care there is going to be in 8 years. But it is enough to make me rethink whether or not I will give up what I have now. I love my job and what I do, and part of that is due to the people I work with. I love my boss and the other staff at our main office. It was a definite possibilty that I would look at other employment if my boss were to leave, but not now. I think it is crazy that I would consider keeping a job simply because of the health insurance benefits. But it is now something I think about, that I didn't think about a year ago when I wasn't sick.



Then I got thinking about the whole work load of it. Is taking on a larger house with more bedrooms and land and responsibility really a good option? What happens if I get sick and my husband is left to manage things himself? This weekend was a bad one, not the worst I've had, but close. I still managed to get some chores done but I think that was so I didn't feel any overwhelming guilt for not doing anything. (I'm still fighting lots of guilt battles, so I try to ward some of them off when I can.) What will happen to the business if I go through flares where I am unable to work around the Bed and Breakfast? If I have to call in sick at work now it doesn't have the same effects as if I tried to call in sick to my own Bed and Breakfast. And what about the days he is gone due to the modifications he is making to my plan? How is that going to work?



It was all pretty depressing the more I thought about it. It is my plans for my second career that keep me making those deposits to the savings account each month, try a new recipe that I might use on my guests one day, or appreciate my little house and little mortgage payment a little more. It is my plans for the future and what "could be" that help me through the really difficult "right now" days. It is knowing that someday going to work is going to mean getting to do all those things that truly bring me joy and that gets me out of bed to go to work every day now. I finally decided I have to keep planning for the future and keep living for today. I have to continue my journey to figure out what is my New Normal. I have to continue to research, explore, and experiment until I find that combination of treatments and medications and lifestyle changes that is going to allow me to live the life that I want to live. I can't stop living because I don't know what the future is going to bring. I guess I have never really known what the future will bring. And looking back, there have been more occasions than I can count where the future didn't exactly bring me what I wanted. But I took what I was given and rolled with it. That is all I can do now. Continue to plan for the future, continue to live in today, and continue to take my blessings and what I am given and enjoy them for all they are worth.