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.

There has been so many times where I would feel so depressed because my life was no longer the same since my Lupus diagnosis. There are so many things that I'm not in total control of anymore and it seems like I have to be cautious about everything, having children being one of them. I also get doses of people thinking they know what's best for me better than I do (I'm talking family members and friends, not physicians). Their advice always comes from the heart and they always have good intentions, however, it makes me feel like I have more boundaries and has, at times, added to my depression. I already know my boundaries. There's no need to receive any more reiteration. It just makes me think about my boundaries even more when I'm already trying to live a life with them. 

Always having to be careful of what you do everyday has caused  me to feel a bit more down about life I guess you can say. Don't get me wrong, I don't necessarily feel like this every single day but I definitely have my moments....until I got this little puppy of mine. She makes me smile the biggest smile and has made me feel so light hearted. I'm usually full of worries and anxieties but with her, I've been forgetting about them. She is such an amazing little blessing. I can't even begin to tell you all the little things she does that puts a smile on mine and everyone's face. My husband is totally smitten with her too. And to think, I received a lot of "you shouldn't get a puppy", "you're crazy to get a puppy", "they're a lot of work", "you're going to flare if you get a puppy, they're just like having a kid", etc. This all comes from concern from others but sometimes, it just made me more unsure of myself when I've been trying to battle this disease. 

I'm a firm believer of if you think negative, then negative things will happen but if you think positive, it won't be so bad. Yes, having a puppy has caused lack of sleep for me but I try to be responsible with my disease. For instance, I nap when she naps. My friend that told me that having a puppy is just like having a kid was right. I already knew that fact though and was already preparing for it.

I can't help but get this burst of energy every time I'm with her though. She's so playful and absolutely loving. I just feel so happy with her :-)



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.



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