Wow! It’s been so long since I’ve written anything to post on my blog, I don’t know where to start. I think it’s best to give you a few updates and leave some more detailed stories to share soon. I’ve wanted to write, but I had some “restrictions” limiting what I could write about. But now I’m back, and looking forward to spending more time here.
I’m sure it comes as no surprise that my bladder is still pretty high on my “invisible symptoms that suck” list. I’ve continued to have Botox injections into my bladder every three months to try and help with my retention issues. Unfortunately, I need to have both my urethra and bladder dilated (stretched) with each procedure, so I have to go under anesthesia and come home with a foley catheter each time. It does seem to be helping, but I continue to have a hard time peeing almost daily. I’m sure that’s due to my MS brain continuing to short-circuit when it comes to sending the correct signals to my bladder. The good news to this ever-present problem is that I’ve had the same urologist forever–and he’s the best!
For reasons unknown, but coincidentally after my second round of Lemtrada, I’ve lost my appetite and too much weight. Things just taste different to me now, so it’s harder for me to eat since I don’t enjoy it. My clothes don’t fit, my boobs have shrunk (they’re the first to go, unfortunately), and I don’t have much energy despite protein shakes, eating small snacks filled with protein, etc. My doctor even prescribed a liquid prescription medication to help increase my appetite, along with telling me to eat “whatever I want, whenever I want it”. I’ve been told to just think of myself as a famous actor that has to gain a lot of weight for a movie roll. So I immediately thought of Tom Hanks in Cast Away. But then I realized he had to lose 50 pounds for the roll… but you get the picture. I suppose if I were a famous actor making millions to put on some pounds, that might change things – but I’m not. So my love for eating is on hold. It’s like my taste buds were removed, so eating and drinking just isn’t as easy or natural as it should be. I’m not giving up, by any means. I’m determined to get my boobs back!
I’ve added an Infectious Disease doctor to my list of people I talk to the most. He’s even got a spot as a favorite on my iPhone. How sad is that? Sparing you the details at this point, I’ve had some (more) new issues since my second round of Lemtrada that require the care of this specialist. After a lot of expensive medications, a picc line for 20 straight days of three-hour infusions, weekly treatments and countless blood tests, we’re still trying to fix me. I’m beginning to feel like some relief is on the horizon, and that gives me hope.
Let’s wrap this up with something happy! About a year ago, we adopted an Old English Bulldog (he was six months old at the time). We named him Nixon because my son Jake is obsessed with Nixon watches (a San Diego company), and not after our 37th President who was “not a crook”. He and our boxer Grace (almost 4 years old) are best buds. He grunts, snores, farts, is full of wrinkles, loves to cuddle, eats and chews way too many things he shouldn’t, has huge paws and the most beautiful green eyes. Nixon is the first non-boxer dog we’ve had, but he’s equally as awesome. Here he is waiting patiently for his birthday cookie.
If you follow my blog, you may have noticed I had taken down about four posts (not by my choice). I recently added them back, so you might have received a few emails saying I posted new stories. They aren’t new, and I was able to put them back where I originally had them.
I’ll be back soon, we have some catching up to do!
Love and hope,