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

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 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.