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

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.

I'll Take The Shiny One

So you will remember that earlier this week I started the journey of East meets West beginning with my diet. One of the theories that I had read repeatedly was that a Lupus patient should remove all processed foods from their diet. I have even read numerous personal accounts from patients who said they felt that this dramatically increased their health and reduced the number of flares they experienced. Well alright, I'll try it. (I discovered this is going to be harder than it sounds, but that is another day. ) I told my husband the plan and he was on board. He's one of those guys who actually loves to cook and he loves the idea of making something from the very start to finish. (Which is evident in his hobbies, but again, something for another day.) In an odd coincidence there was a show on Food Network that evening discussing the preservatives that are put into our food. One tray compared store bought bread to homemade bread after a two week period. It was both gross and alarming. We decided to start with our bread.

My husband has made homemade bread before, as well as homemade pizza dough, pastries, what-have-you. But he decided that if he was going to be making bread often he needed a new machine. A new bread machine. So off we went a few days later to get his new toy. And after just a few minutes of comparison "I'll take the shiny one" is what he told the lady behind the counter. The frugal, comparison shopper in me cringed at the thought of not visiting at least two other stores as well as at least three online options. But that night, instead of our normal bowl of ice cream for dessert, we had fresh bread. Good stuff Maynerd. There is nothing in the world like warm, fresh bread and butter. I was in heaven and was no longer upset about not comparison shopping for the machine.

I realize I still have more research to do. Comparing types of flour and yeasts and what is better for us and what is not. Looking at the various recipes that came with the machine and trying each and every one. I'm going to hate that part of the research. This taking processed food out of my diet isn't going to be that hard. Oh wait.... what do I do about the Cheerios, the Nilla Wafers, the popscicles, the brownie mix, the tortillas, the salsa, the cheese. Heck, by some definitions everything I eat, with the exception of the vegetables from the garden and the beef from the freezer is processed. Hmmm.... this may be a little harder than I thought. Guess I will just slice another piece of bread and contemplate what goes next. Where is that knife?

Until next time, take care of you.
Nicky

When You Bury Me Make Sure It's a Huge Party

Today I attended a funeral. It was the most difficult funeral I have been to in my life. I wasn't friends with the guy, though we were sometimes at some of the same functions and had even gone camping together. But the family was good friends of good friends of mine so I often heard about them. And up until a couple of months ago my husband and the wife were involved in professional circles together. He was killed in an accident in his garage. He left behind a wife, three beautiful young daughters and many, many friends who will miss him dearly. He was 34 -- the same age as me. As I said, it was absolutely the most difficult funeral I have ever been too in my life. As my husband and left the funeral home and were walking through the parking lot, I looked at him as said "When you bury me, make sure it's one big ass party." He looked at me odd and kind of tried to smile. It wasn't until later that what I had said started to sink in.

My husband and I have only been living the "chronically ill" life for a few months now. The whole concept of pills and doctor's appointments and lab work and research and lifestyle changes and diet adjustments is still pretty new to us. I know that much of my new life still hasn't sunk in with me yet. I know that I am still not slowing down the way I should be or learning to prioritize rest over other things. I know that the fact that I have severe kidney involvement that could potentially lead to renal failure if I do not respond to the medications hasn't totally been absorbed and processed by my brain. I would think if I had I would be far more concerned than I am. Maybe because I try to make light of things so as not to worry my family and friends, I myself have taken that "it's no big deal" attitude. Don't get me wrong though, I still take all my meds as prescribed, attend all my doctor's appointments and have the required lab work done in time for results to be available at the appointments. My husband and I are making changes to our diet as I do more research. And I am beginning to research alternative therapies to work in conjunction with the pharmaceuticals. But I just don't think the idea that I will be living with this for the rest of my life has entirely sunk in yet.

Years ago a Lupus diagnosis was a like signing a death certificate. Patients generally only lived 5 to 10 years if they were lucky. But that was because diagnosis took so long that significant organ damage had usually occured and there was no way to treat it. Now, with earlier detection and better medications, patients are living longer, normal lives. (There's that normal word, what exactly is normal in a Lupus world?) But I wonder if that means I will be living until 60, or 80 or 100? Will my husband bury me or will I bury my husband? Is this disease going to rob me of years with my family, or will I die old like my grandparents? Will I dance at my children's weddings? Or my grand-children's weddings? Will I get to continue to work or will I be forced to retire young? Will I get to start my second career the day after my youngest graduates from high school or will that become a lost dream? There is just no way to know. There is no predicting anything. I almost wonder how one is supposed to make plans for the future, for next year, or for next week when one lives with Lupus. I sent in my registration for a conference I have to attend for work next month. Registration monies are paid and hotel rooms reserved. But in the back of my mind I wonder if I will feel up to going. And if not, will I still go anyway and put on the brave face because I want to keep my job, or will I have the strength to let my boss know that I can't go. There is just no way to know.

Until next time, take care of you.
Nicky

A Rough Day - Is This My New Normal?

It's only 9a and its a rough day already. I'm hurting all over, running a mild fever, tremors are really bad, and my kidneys really hurt - both sides this time. Is this what I have to look forward too? I'm not sure I can do this. I keep thinking that I am going to get this thing under control and that will be that. Life back to normal. But maybe this is normal. Maybe these days of wanting nothing more than crawling back into bed with some of the really good pain meds is my new normal. I'm not sure I can do this. This cannot be my new normal.

And the anxiety. I keep wondering if I am sick enough that I need to call the doctor or is this just part of the disease process. I'm trying to figure out if I've got the same symptoms that landed me in the hospital or am I being paranoid? Is this part of my new normal? The paranoia that something is really wrong and I'm ignoring it and the anxiety that comes with that?

I keep telling myself that I am fine and I see the doctor in 2 weeks. I can wait it out. I just need to finish what needs to be done today and head home. The problem is that there is lots to be done today. I'm trying to slow down but sometimes life just won't let me. I have to keep working. I can't afford not to work and I can't afford to lose my insurance. I tried working part time but there was full time work to be done. I might as well go back to full time and earn the vacation time so that I have it when I need it. I try to convince myself it is just the heat. And with the AC at the house not working right, the house is hot. Its wearing me out and I'm not sleeping as well as I should be. I should just take the sleeping meds every night, but I hate to do that.

It is just a really bad day. And this is not the day I need this. Too much going on that I have to be "on" for. This is so hard.

East Meets West

So today is the first day in my journey of East meets West. Traditional versus Contemporary. I don't like all of the medications that I'm on. But I'm not willing to give them up. There are lab results that show the pharmaceuticals are working. And I am hoping that the results from the round I do this week continue to show improvement. I do admit that I am having a hard time putting all of these chemicals in my body. Maybe even a harder time with the idea that I have to take some of the medications to offset the effects of another, but I have to take that one to battle the disease. It seems like a crazy "catch-22" situation. Don't get me wrong. I'm not a crazy health nut. I've been involved with the health care industry for almost 20 years in one form or another and understand the virtues of a healthy lifestyle. I also love me some ice cream and Oreos and Cherry Coke. You could say that I am of the thought process that "everything is good for you in moderation". Exercise, red meat, dessert. It's all good -- in moderation.

But am coming to believe that I may have more control over my own health than the pharmaceuticals. I am a practicing Christian and believe in the power of prayer. I honestly believe that it was those prayers I received from friends and family that helped me through my hospital stay without going totally insane. And I believe it is those continued prayers that are helping my body react positively to the Cellcept. I will definitely take them. And continue my own.

How much more control do we have over our own bodies? And how much control does Mother Nature have over our bodies? The first step I am taking is with my diet. Small babysteps, but steps nonetheless. Since coming home from the hospital 2 months ago I have (dramatically) increased my fluid intake, and fruit/vegetable intake, and decreased some of my red meat intake (that's been a tough one). But beginning today I will be even more aware of what I am eating in order to eat those foods that are going to best cleanse my body. Yes, cleanse. That's hard for me to say, because it sounds so tree-huggery and I am so not a tree-hugger. But I know what I feel like when I am over-worked, over-processed, and over-stressed. What does my liver or my kidneys or my lymphatic system or my blood feel like? Or am I sick and feel the way I do because I have over-worked and over-processed and over stressed these vital organs of my body? Did ancient civilizations who ate all natural and nothing processed have Lupus or Nephritis or other chronic health conditions? That is the next step; to begin to remove the processed food from my diet. I know it will be virtually impossible to remove it all, but I think we can remove a great portion of it. Though I'm not sure how the kids are going to react to having to make all of their own cookies and snacks instead of grab the box off the pantry shelf.

It's a small step. Actually several small steps. But the journey begins towards my new normal.

The Best / Worst Piece of Advice I Ever Got

I can't quite figure out if it is the best piece of advice I have received so far, or the worst. It came from one of the gentlemen at church. His wife was diagnosed with Lupus in her 30's, and since they have children my age, you can see he has been living with it for a long time. He told me "The one thing you always have to remember is that you are sick." WHAT!?! I don't want to be sick. I'm tired of being sick already. I haven't been doing this very long and it's already old. I don't want to be sick. I'm tired of the medications and the doctor's appointments and the lab work and being tired and not being able to go to the lake with my friends and the guilt and just the whole damn thing!

But OK, I get it. I am sick. I have a chronic illness and will have this chronic illness until the day I die. That is really hard to fathom. I'm 34, the rest of my life is a really long time - I hope. I've made other decisions that affected "the rest of my life". I have two children. I knew that was a lifelong commitment, but at the same time I knew there would come a time when they wouldn't need me as much. I've joined groups and associations that are also lifetime memberships, but how much and when I choose to be involved is my choice based on the the other activities of my life. This one. This one didn't give me a choice. And this one I have no control over. For the rest of my life.

I know the arguments. I know that I have some control over the disease by the lifestyle choices I make. And trust me, I'm looking at all of them! I am in information overload at the moment from all of the research I have been doing. And these are lifestyle choices I have to make for the rest of my life because I can never forget that I am sick. I am sick for the rest of my life. That is just so overwhelming. I'm 34. I'm supposed to have a lot of life left. So I am going to be sick for a really, really long time. I hate the thought of that. I just can't fathom it. I understand the blood work and the urine tests and the medications and the treatment options and everything I need to be doing to make all of that work the way it needs too -- but I can't fathom that I will dealing with this for the rest of my life. It just hasn't sunk in yet. I hope it does soon.

Baby, Baby, Baby

So I admit it. This whole baby thing has got me. I thought I was OK with it. I thought I was fine with waiting but I'm not. At least not for the next few days. My body is getting ready to remind me that I am not pregnant and I am taking it really, really hard. In the grand scheme of my plan this was when we were supposed to start talking about it. The timing in my head worked perfectly and now that is all screwed up. We haven't talked much about it, my husband and I. I mentioned it once when I first came home from the hospital and he just said it wasn't a big deal. I promised him that someday, somehow I would make it happen and he told me not to worry about it. But he's like that. He just lets things roll. Most of the time I think I can read him, but I have to admit that when it comes to my being sick, it is a little harder. He seems to put on the bigger front, maybe for me. I admit, it is really really sweet. But sometimes I wish he would just tell me what he is really feeling or thinking. Sometimes I feel really, really alone which I know I shouldn't because he does so much for me. In the most simplest of terms, he spoils me. So it makes me feel guilty. I hate that guilty feeling. I'm feeling so much of it lately. It is about to drive me out of my mind. Guilt about not getting pregnant. Guilt about the way the medications are making my body look. Guilt about the way my disease is changing our lifestyle. Guilt about what I am able and not able to do around the house. Guilt about having to spend money on medications and dr.'s appointments. Guilt about how all of this is going to change our plans for the future. Guilt. Guilt. Guilt.

I Consider Myself Lucky

I consider myself really lucky. The time period from when I started showing signs and symptoms of Lupus to the time period where the signs and symptoms were really bad to the time when I received my diagnosis was a relatively short period of time when I read and listen to others stories. It was less than a year. I guess the planets had aligned just right that I was in the middle of a flare when I went to see my gynecologist for my annual exam. I told her all my girlie parts were working just fine but it was some other random and odd stuff that I was concerned about. When I went through the crazy mixed up list of stuff she said "It sounds like either Lupus or Rheumatoid Arthritis to me. You need to go see your primary care physician." To which I responded "I don't have one, who can you suggest?" It took a day to find one that was accepted by my insurance company, that was taking new patients, and wasn't one that someone had told me to stay away from. My hometown is sort of small and options are limited. But again, the planets aligned just right and the Lord smiled. At my appointment I explained my list of odd and random symptoms and mentioned what my gynecologist had suggested. He decided not to do anything further without getting the full battery of blood and urine tests done. Of course it helped that the rash across my face, neck, chest, arms and back was blazing red that morning, I was running a slight temperature, and it was evident that I was losing hair. When I returned with the results his first words were "Yep, its Lupus. Look here, you've got all the markers. I can't help you with any of that, you need to go see a rheumatologist."

For a moment the planets unaligned in that I could not get into either of the local rheumatologists. One scheduled me in September (I was calling in April). The other, which was the one I really wanted to see, wouldn't even schedule me. The best they would do is take my name. My insurance was not contracted with any of the rheumatologists in El Paso, TX which was just 45 minutes away. I ended up scheduling to see one 10 days later in Albuquerque, NM which was 3 hours away. He was awesome. The man spent 2 hours with my husband and I. And the few minutes that he had to see another patient, he left reading material for us, then reviewed the material when he returned. It was the most incredible doctor's appointment I have ever been too. He noted some concerns on the labwork and we scheduled to come back the next week for additional testing and kidney biopsy. The planets aligned again and that didn't happen.

The day we should have left for Albuquerque, I ended up in the ER and later admitted to the hospital to treat a kidney infection. I spent a week there and against my doctor's wishes, left on Mother's Day so that I could celebrate with my children. Eight hours later I had to return, by ambulance, where I was admitted and spent another 12 days. Why is it that I say the planets aligned again and the Lord smiled, because the rheumatologist that I had wanted to see all along was called in to consult on my case, along with one of the best nephrologists in our small town. Both of them kept me on as a patient after I was discharged. Find the silver lining, right?

After 12 days of poking, proding, an echocardiogram, a chest x-ray, rest, fluids, antibiotics, steroids, and a blood transfusion, my body was finally strong enough, barely, for the kidney biopsy. I love my nephrologist. She came in one afternoon, very matter-of-factly said she had received the preliminary results of the biopsy and it showed Stage 4 Nephritis. She briefly explained what that was, what would happen if I didn't pursue treatment, and then started explaining the two options for me. "Wait, wait, wait. Slow down. Start over so I can take notes" as I was frantically reaching for the notebook and pen my husband had left me. She again explained the two treatment options to me, and that while I didn't have to decide at that moment I did need to decide relatively quickly. Both drugs are pretty potent and have their own lists of side effects, none of which are very nice. I was looking at about a two year treatment window, oh and I wouldn't want to get pregnant while on either of the treatment options. Wait, what? We were supposed to start thinking about that. I had even talked to my gynecologist about what I should be doing to get ready. My body at 34 is much different than the body that gave birth to my babies 10 and 12 years ago. What do you mean I can't get pregnant for 2 years? You don't understand, my husband and I are newly married. We haven't even celebrated our first wedding anniversary yet. That isn't part of our plan. It wasn't part of our agreement. He's given up smoking and doing awesome. No, no, no. I'm supposed to be starting to take prenatals and the folic acid and start exercising a little better. And then we'll start trying later this summer or fall. You're screwing everything up!!

She left. I cried. I looked at the hastily scribbled notes in front of me, tried to add in some more pieces for when my husband came to see me after work. Then I cried some more. My life had suddenly changed in so many ways, I couldn't even begin to fathom.

The Search For My New Normal

It has been exactly three months (less 3 days) since I was given my Lupus diagnosis. And it has been exactly 2 months since I was given my Stage 4 Lupus Nephritis diagnosis. What a crazy, mixed up whirlwind of a ride this has been. I went from taking no medications (except birth control and the occasional Tylenol) to a daily regimine of 9 medications and supplements for a total of 16 pills plus the as needed pain, sleeping and anxiety medications. I went from seeing my personal doctor once a year to monthly appointments with the Rheumatologist, the Nephrologist, and the Blood Lab. I went from being the Eternal Volunteer and willing to help anyone do anything to desperately learning how to prioritize what is important and learning to say "no" to that which is not. I went from having spent no time in the hospital, outside of the birth of my two babies, to three visits to the Emergency Room and a 19 day stay that I'm still not sure I have totally recovered from in a 4 month period. I went from making plans for the future with my new husband to wondering if I will be able to follow through on my side of those plans and learning to deal with the guilt of not being able to give him what I said I could and what I know he wants. I went from "go, go, go" to "go, stop, stop". My life as I know it has changed in so many ways.

I have always believed that God gave us 24 hours in a day and that we should use every one of them to the fullest. I have been "involved" and the "eternal volunteer" for as long as I can remember. It is just something that I enjoy doing. Now I must learn to stop. Now I must learn to say no. Now I must learn to determine what it is that brings me the most joy and focus my attention, and more importantly, my energy (what little of it I have) there. This is not easy. This is actually very difficult. There are so many things that bring me joy and that I enjoy doing that trying to figure out which one goes at the top of the list, or even near the top of the list, is hard. I'm feeling guilty. Guilt is not a good thing. I'm feeling frustrated. I'm feeling confused. I'm feeling tired. I'm feeling in pain. Did I mention I'm feeling guilty? Guilty about many different things. My life as I know has changed in so many ways.

This is my journey. My journey to find that which is my normal. Because my normal as I knew it for 34 years is gone. I must now learn new breaking points. I must now learn to recognize the signals my body is sending me much better than I ever did before. I must learn to be in control of my life and my body much better than I ever did before. I must learn to say no and learn to stop. I must learn what is important to my heart and not my head. My life as I know it has changed in so many ways.