On the Personal Side

I realized after receiving a message from a follower of the blog, that I haven’t responded to many of the things I had mentioned that were going on with my lupus, the BRCA 1&2 testing, and Bubba’s PFAPA.  So this post is an update to all of it!

It has been nearly a year since I was BRCA 1&2 tested and I am so relieved and happy to share I was negative! I honestly did think that perhaps I wasn’t going to be based on my family history, and what seemed like every doctor I talked to, acted like I would be positive! I still have breast lumps that are continually followed by a specialist, as well as my regular physician, but in terms of genetic links to breast cancer, I do not have the BRCA 1 or 2 genes.

Bubba is also doing very well! Of course, as soon as I post this, I am sure he will have another fever! (This is the way of our life!) However, at this point I have stopped counting the days, and it has been months since his last PFAPA fever. It has been splendidly wonderful – but I am still always on the lookout for his signs and symptoms of the next episode with PFAPA. I do expect he will certainly have more PFAPA episodes in his life, but thankfully we have begun the journey (or at least for now anyway) of more time between. Our doctor has warned us that a few months PFAPA fever-free doesn’t mean it’s done. But we will rejoice in the time we are having now! He has had symptoms – nearly on the same cycle basis of a PFAPA fever coming, but thankfully the symptoms subside and no fever has come. We will be forever changed by his PFAPA though – and it’s always there in my mind.

My SLE still flares and subsides. I have had a wonderful few months on Diclofenac-Mistoprol with the Hydroxychloroquine though. This particular combination of drugs really got my disease back under control since the birth of Bubba. I struggled with the stomach problems, with the lupus symptoms and just couldn’t get it all in check. This last combination is working beautifully for my stomach, as well as most symptoms. But no matter what treatment one is partaking in, with SLE, flares are inevitable. Once again – after a wonderful few months – I am flaring. But I am sure that within a few weeks to a month, I should have another nice respite from the worst symptoms. What is really getting me this year is the joint pain, burning, and overwhelming malaise and exhaustion. It’s very hard to work feeling like I have morning sickness (i.e. malaise) that has no end. At least when you are pregnant, you know there is an end to that part of the pregnancy!

This winter has NOT treated my sinuses well at all. I am sure the last sinus infection, which has lasted well over a month, has not helped my flare and more than likely created it. I have been on antibiotics and finally have started to get this infection under control. I do not believe there is any coincidence that the flare is occurring just as the sinus infection is clearing and the antibiotics are near the end.

More than anything with this post, I want to impress how thankful I am that Bubba has had some relief from his PFAPA over the last few months, and how thankful we all are that my BRCA 1&2 are negative. It was a lovely thing to have some relief inside this house!