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.

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