Friday, July 31, 2009

I'll Take The Shiny One

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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

Thursday, July 30, 2009

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

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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

Tuesday, July 28, 2009

A Rough Day - Is This My New Normal?

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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.

Monday, July 27, 2009

East Meets West

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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.

Tuesday, July 21, 2009

The Best / Worst Piece of Advice I Ever Got

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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.

Monday, July 20, 2009

Baby, Baby, Baby

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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.

Saturday, July 18, 2009

I Consider Myself Lucky

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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.

Friday, July 17, 2009

The Search For My New Normal

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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.