On my last appointment with my Nephrologist, I finally got the OK to start weaning off my Prednisone. He wanted me to wean off slowly....1mg a week until I'm no longer on Prednisone at all. The idea of this is a bittersweet thing for me. For one, I've been anxious to get off of it after being on 20mg a day for the last six months. Who wouldn't be? The side effects of Prednisone are crazy sometimes. However, secondly, every time I wean off too fast, I start to flare again. I always worry if my body is going to accept not being on as much Prednisone. Lastly, in the last 6 years, I've never been able to get off of Prednisone at all without flaring again. Needless to say, I'm very nervous about it.

I'm only down to 16mg this week but I could already feel the effects of it. The first couple of days after weaning down, I start to get really tired. The energy is just depleted from my body. I start to feel "not well" and my joints begin to swell and hurt, especially my knees. It's not the best feeling when I'm trying to manage a department at work and have to keep up at home...with a new puppy.The mornings are the hardest being so tired and trying to get ready for the day. It takes me forever to get moving.  The first few days makes me feel "foggy" too. At work, I've been trying to offset this by writing everything on Post-It Notes so that I don't forget anything. This has actually been a habit for me for the last few years and has worked quite well.

There have been lots of changes at work. The firm has let a few people go and others have been shifted to other departments. I lost two people in my department and received one new one. I started training my new employee this week. Of course, it lands on the day after I started weaning down, right? Needless to say, it was a little tough to train when I wasn't feeling well and would have some "foggy" moments. I also have good reason to believe that our insurance may be changing. I have great insurance now where I have the option of seeing any physician I like. Because of this, I feel I have some great doctors. But now, I may be losing some of them as they only take certain insurances. Well, I guess I'll cross that bridge when I get to it.

Other stresses have been making it difficult for me to deal with the weaning off too. I had a difficult time with the new puppy last night. I had just come home from a hard day at work to a 12 week old puppy that had so much energy that she didn't know what to do with herself. Then there's me that had zero energy and just wanted to eat dinner and go to bed. Playing fetch with her helps but taking her for a walk wasn't an option since it had been raining and thundering like crazy the last couple of days. Thank goodness that my husband was home to be able to play with her too for a little bit. I take her to puppy classes every Wednesday so at there's at least one day a week she gets tired out. Another good thing is that she sleeps through the night now and that means no more broken sleep for me.

One good thing about being so tired with everything going on is that I no longer have to rely on taking a sleeping aid (Ambien) to go to sleep and stay asleep anymore. I'm so very happy about that because I've been wanting to stop taking it for so long.

Weaning off of Prednisone isn't easy but I'm hoping to be able to manage it well enough to keep living a "normal" life.

I can't believe it's only been two days since I picked Sophie. I absolutely adore her. She has not only given me happiness that I never imagined I could have but she has also given me something to look forward to in life. You see, I would love to have a child. I'm 38 years old now and I'm not sure if I'm ever going to be able to have any children. I have some blood clotting factors that are getting in my way (antiphospolipid antibodies and +SSA and +SSB factors), not to mention my lupus nephritis. This does not mean that people who have these can never have children but we just have to be more cautious. Given my age and these other factors, I'm not sure I want to risk it. I guess it depends on what day I'm having if you ask me...but today, I'm feeling "okay" with it.

So today I had two specialists appointments. The first was with my nephrologist and the second was with my cardiologist. Both were equally important appointments but I was really more anxious about my kidney doctor appointment. The reason for that is because today was the day I could possibly start weening off of my Prednisone.

I was officially diagnosed with Lupus Nephritis in February 2012 via a kidney biopsy. I even got a second opinion. Since then, I started taking Cellcept and was put on 60mg of Prednisone a day to combat the disease. The plan was to start Prednisone at 60mg a day and gradually decrease until I was on 20mg. From then, I was to stay on 20mg a day for 6 months. Well, today I finally reached my 6 months!

Prednisone has always been both a friend and a foe. It has helped me through some of the toughest times of my disease flare-ups but it has also caused a few side effects I would have rather not experienced. For me, the worst side effects are insomnia and increased anxiety. I've been okay with taking Prednisone for the last year this time around because kidney involvement is a big deal. Although everyone has two kidneys and can function on one, if I am able to keep both, I'm going to try my hardest to do just that.  I have to be honest in saying that this past year, Prednisone has been my friend. I haven't felt so close to normal in a long time until these past few months. I'm sure being on Cellcept has helped too, though. (This is the first time I've ever been on Cellcept and so far, so good! Well, with the exception of the first couple of weeks of being on it.)

I've been really anxious to get off of Prednisone because for one, it's never good to be on it for so long and two, I can't wait to get rid of this moon face of mine. In the past, I've never been able to go down in my dosage past 5mg before I would start to flare again. This time around, I know I have to be extra careful not to let my kidney involvement advance any further. So needless to say, I was a little hesitant today when my nephrologist told me that he plans on eventually weening me off of Prednisone completely.

This nephrologist is one of my newest additions to my plethora of specialists so he hasn't had much experience (compared to my Rheumatologist) with how my lupus works with the medications that I have been on. I didn't hesitate to tell him of my past experiences with Prednisone, that's for sure. He still wanted me to be off of Prednisone completely. He is, however, planning on weening me off by 1mg a week and to see him in 8 weeks. By then I will be on 12mg of Prednisone. I should be excited, right? Um, yes but not completely. I'm really a nervous nelly about it!

As I mentioned before, I'll be getting my puppy in 2 days. With a new puppy comes a lot of training and lack of sleep. Lack of sleep for me usually equals flaring. What timing, right??? Well, I decided I'm still going to follow the doctor's orders and see how it goes. I'm guessing he will be deciding whether to stop decreasing if I start to flare. But you bet your bottom dollar that I'm going to be calling him at the first indication of a flare! Ahh, the joys of dealing with this disease....

I'm really praying and hoping all will go smoothly and be okay. Only time will tell I guess. But with the puppy being with me tomorrow, I think I'll start this new regimen either this weekend or right after.

Oh and by the way, I got the "all clear" with my Cardiologist. My heart is quite healthy!

Getting this new puppy got me thinking. Since I am finally getting a dog that I've been wanting for so long, some fears have been creeping up on me. In my puppy post, I mentioned how I had a dog many years ago that I had to give up because I wasn't around much. Since that day, I promised that the next time I ever got one, I'm going to be more committed and responsible to my next companion. Fifteen years later, here I am...full of doubt for myself and worrying that I am not going to be able to live up to my own expectations.

What if I'm flaring, how am I going to handle the puppy? Am I going to be able to take her for walks? Am I going to be able to brush her? What if I can't?

All these thoughts, have been running through my head since my husband and I decided to get a new addition to our family. And since then, I realized how different I am now than I was 15 or so years ago. This fear has made me more determined to control what I can. Some people call it "over-thinking" things and being overly cautious but I call it "being prepared". I think ahead now and come up with worse-case scenarios that I can deter from.

I already have it in head that if I'm unable to take Sophie for a walk because my joints are hurting, then I'm going to make sure I play with her for a longer amount of time in the house (i.e., playing some tug-of-war with some rope and tug toys, stimulating her with some sit & stay or come-to-me training, etc.). If I know that I'm in a flare and in pain and don't have any energy, I'm going to take naps when she naps. I have also already checked out some doggy daycares that I can take her to so she can relieve some puppy energy. The cool thing is that I found one a few blocks from where I work! Just like kids...

The whole puppy situation has got me thinking about my life since I've been diagnosed with Lupus. "What if I can't?" seems to be the running question in the back of my mind.  I've been so fearful of what the next day is going to bring. When I look back into my teens and 20's, I realize how fearless I used to be. I never thought twice about trying something new and....just did it. I even hiked up a mountain for Pete's sake! I rarely had any doubts with my abilities.

What happened?

Every time I ended up in the hospital is what happened. Knowing I was in really bad shape from (what the doctors told me) is what happened. I became afraid of my looks due to my illness and medications. I became afraid of eating certain things. I became afraid of over-doing things.  I became afraid.

I've learned to adjust my life now and trying to prevent things as much as I can. I think of worse-case scenarios and try to take any necessary steps to avoid them. I take naps. I eat better. I take care of myself better.

I guess this whole Lupus thing has given me many lessons in life...invaluable ones too. I don't think I would have the knowledge I have had I not been diagnosed.

And somehow this little puppy that I haven't even gotten yet has given me determination and motivation to do the best that I can in caring for her and myself. We are going to be two peas in a pod.

For years I've been wanting a dog but have been hesitant because the last one I had, I ended up giving away to a lovely lady that I worked with. To this day, I carried the guilt of having to give my little one away even though I knew it was the right thing to do. You see, I was in my 20's when I had gotten him. Being in my 20's I was never home and didn't have the time to raise him properly. I miss him so much everyday to this day but I know I did the right thing. Ever since then I made a vow to myself that when I do decide to get another dog, I will make time to properly train and care for him/her.

Well, a couple of years ago, I decided I wanted to get one. Unfortunately, we were still living in my small condo, a carriage house style where you had to climb a flight of stairs to get in and out of. I knew with my lupus, it would be difficult at times to potty train a dog especially when I had to run up and down stairs every few hours when I wasn't feeling well. So I decided to take it one step at at time. First I had to pick a breed. Check. I already knew I wanted a small dog that didn't shed. I'm small myself and having big dogs knock me around wasn't going to be ideal. The second step was finding where to get my dog. That came easy. A coworker had just gotten a small dog (a pomeranian/bichon mix) and the person she got her dog from was planning on another litter in the near future. So I put my name out there. Turns out this person had another dog that was going to have a litter. This one was a Teddy Bear. The mom was a mix of Yorkie, Maltese, Pomeranian and Shih-tzu mix and the father was a Bichon. I wanted one of these but because I wasn't quite ready to get one on the spot, I decided to wait until she had her next litter.

The next litter came almost a year later (2012). There was only one little male puppy. Well, by this time, my husband and I just bought a house that we were remodeling...and we had some MAJOR renovations going on. Once again I had to pass on this one.

To my surprise, I recently received an email letting me know there was another litter...with pictures. I fell in love immediately...and what good timing! The majority of the renovations were done and I'm at the point where life and it's stresses has been getting to me....A LOT.

So I showed these pictures to my husband. Right then and there, he suggested getting the puppy since I've been wanting a dog for a few years now. I made an excuse and walked away. All night I kept looking at the pictures and doing some daydreaming. The next day, I showed the pictures to my husband again (I just couldn't help it!) and this time, he told me to get the puppy. And there the story goes, I called the lady and told her we were in. ......YIKES!!!....

I realize raising a puppy is going to be a lot of work, especially for Lupies but I also know that they can give people a lot of joy in the long run. I've also heard how pets can bring health benefits, like lowering blood pressure, decreasing stress, improve mood, lower cholesterol, etc. I could use a lot of that too. I guess we'll see how everything pans out but I have a really good feeling about her in my heart. I'm not sure where it's coming from but it's there.

I picked out a name for her the next day...meet Sophie (this is the picture of her that I received in that email):


We get her in a couple of weeks and I'm BEYOND excited!!!

As a person living with Lupus, I am very blessed to say that I do get a lot of help from my husband, friends and family members when I need it.

When my mom knows that I'm not particularly feeling well, she will cook some meals for me and deliver them to my house. She'll even do this when I'm well. There's nothing like the love of a mom!

My husband has been helping by picking up my slack...doing the grocery shopping and cleaning the house. I am very grateful for all of his help, especially when he works long, hard days already...and not the sit-at-a-desk all day job. His job is quite physically demanding. And at his age (he'll probably kill me for saying this..ha!), I'm not sure how much longer his body is going to be able to keep up. But yet he keeps up with everything.

My friends have been so very understanding about my illness and me having to miss out on a few occasions and get-togethers. They always offer to help me in any way they can. For instance, when we go out, they drop me off at the front door to make sure I don't overexert myself when I'm not feeling well or they will ask if they can get something for me.

Even the kids (i.e., my niece and nephews) help me. Sometimes when I'm watching them, I like to take them errand shopping with me. Of course during that errand, I always like to pick up a toy for each of them. I'm an aunt, I'm allowed to spoil them...hehe) The other day, I took them shopping at the local Walmart, picked up some groceries, toys and some other odds and ends. When we got to my house and without me even asking, the kids each took some bags and brought everything in for me.

It's the big things and little things that everyone does for me that I'm so appreciative of. I have to admit sometimes that I can't help but feel like I'm a burden. No one has ever made me feel like I am and everyone tells me time and time again that I am not but I just can't help it. I think it stems from always being the one that helped others, not the other way around.

Through the years, I've finally come to the realization that it's normal to feel guilty and that people like to help.  Never in a million years would I ever take that help for granted. And I just want to thank everyone in my life that has helped me in any way.

Looking back, the one thing I wish I would have done was starting this blog when I was first diagnosed with SLE. Back in May 2007, I was clueless to all the strange things that were happening with my body. Through the last six years, it started to make sense. Don't get me wrong, there are still a lot of weird things going on with my body that I'm still trying to figure out but at least I know what disease I'm dealing with.

Since my blog is still fairly new, maybe I can start from the beginning and give an insight to some of the things I experienced as a "newbie" to Lupus.

Two years before my diagnosis, I was out learning how to play tennis with some friends. I started feeling some pain in my elbow. It was swollen and I was having a hard time bending it. My friend that was with me, who was a nurse, suggested it could have been tendinitis. I never knew the importance of looking into it and thought it would go away on its own. It did a week or so later.

Fast forward to two years later.  One weekend, my boyfriend (now husband) came over to spend the weekend with me. Out of nowhere, I had hives, which looked like big welts all over my face and body. I had no idea where it came from and made a doctors appointment with a dermatologist. Outcome: he had given me some medication and I was told to come back after two weeks if my hives didn't go away. The plan was to then take some blood tests. I never made it two weeks later.....

I remember it like it was yesterday. I was at work one day and the next evening I was at home with what I thought was food poisoning. I was dating my husband but lived by myself in my condo. If you ever had food poisoning before, you would know how awful it is to experience. I was on the floor in the bathroom and could barely move because it had made me so weak. I spent that night on the bathroom floor. It wasn't until the next day that I was able to move and make a phone call to my mother to tell her what happened. She came over right away. I was so dehydrated that my mother and my father took me to the ER to get checked out. They gave me some fluids and sent me on my way. I still wasn't feeling 100% but I kept living my life. A few days later, I had gone to my neighbor's house to have some dinner. When we were finished and I was getting ready to leave, my legs suddenly felt like blocks of cement. They were so heavy and difficult to lift. I could barely walk. When I finally made it home, I looked in the mirror and my upper lip had blown up like a balloon. I immediately took some Benedryl thinking it was some sort of allergy, even though I didn't eat anything out of the ordinary. All my neighbor and I had for dinner was spaghetti.

The following day, I called my primary care doctor and made an appointment. Talking to my sister that night and telling her what had happened, she suggested getting ANA testing. It is an antinuclear antibody test and is often used as one of the tests for SLE or other autoimmune disorders. My sister works in the health field as a nurse anesthetist so she was knowledgeable with some things. She also talked about Lupus and suggested I look into it. At that time I had never heard of such a disease but when I started doing some research online about it, I realized I was experiencing some of the symptoms. My primary care doctor at the time ordered it for me and also took some throat cultures as well. He called me soon after and told me that it looked like I had a staph infection in my throat and immediately had me fill a prescription for Bactrim. We were still waiting for the results of the ANA test. A couple of days later while I was on Bactrim, I started to get some chest pain and shortness of breath. I was still weak from the day of the food poisoning incident but felt weaker. By this point, I was bedridden and couldn't even walk a few feet to use the restroom. I could barely even sleep on my back or turn to sleep on my side. The pain was so intense around my lungs. For days I had to sleep propped up...and I could barely even sleep. Since my doctor didn't say anything to me, I didn't think anything was too horrible. (You see, I was too worried about being a pest to my doctor that I didn't bother to bother him.) When I got too weak (and 2 weeks later), my mother, with a lot of prodding, made me go the the ER again. I was stubborn and didn't want to go far so we had gone to a smaller hospital close to my condo. Bad idea. They did a chest x-ray and sent me home with strong pain medication, all the while not really telling me what was causing all my pain.

Another few days passed and the pain medication not working, I called my primary care doctor and told him about the pain I was going through. In his words he told me that he didn't know what to do with me. "Maybe I can go to the ER and maybe they can figure out what was going on." My boyfriend (now husband) told me that if my parents didn't take me to a better hospital, he was going to drag my butt there. So I listened and my parents drove me to the hospital that my sister works at. Thank goodness I listened. Five days in the hospital and I was finally diagnosed!!! Turned out I had pleurisy and pericarditis AND I found out I was allergic to Sulfa, which is something that Bactrim contained. I was given 60mg of Prednisone and Plaquenil.

I was lucky because I worked for a great company that was very concerned about my health issues. I ended up being off of work for 3 months to recover. Needless to say, I switched my primary care physician and continued with the one that I met during my stay in the hospital. He is such a blessing!

I still wonder to this day what would have happened if my dermatologist would have taken that blood test. Would I have known sooner about my diagnosis? I'll probably never get the answer to that question but it will always be in the back of my mind. While I was in the hospital, my Rheumatologist told me that normally Lupus can be difficult to diagnose but because I had pleurisy, he knew Lupus was the culprit. I'm just happy I received a diagnosis.