Treasuring Moments

Minus Tuesday last week, the week went pretty good. I've been able to be up and moving most days and I was even able to do a little family fun on Saturday. I was scheduled to have an ultrasound of my abdomen on Saturday at the Roper in downtown Charleston (the one Mark works at), and since I'm planning Carter and Kayla's birthday party, (Sharks and Mermaids) I thought it would be nice to go for a walk along the beach and collect sea shells for the party. 

After my ultrasound at the hospital, we went to a new (to us) restaurant in Mt. Pleasant called Eggs Up Grill. It was delicious. I have trouble trying new places because we're always disappointed and then we feel like we've just wasted money. We'll definitely be going back to this place though.

It was a BEAUTIFUL day. Getting out of the car, it felt decently warm. A quick thought ran through my mind that maybe we wouldn't need those jackets after all. Boy was I wrong. The farther down the boardwalk we went, the colder and windier it got. Oh my gosh it was windy. Not really out of the ordinary though for April. If not for the heavy wind, it would have been perfect. I've found that I treasure these kind of moments more now that I'm not able to move around like I used to. So the moments I do get to get up and get out I'll take, even if I'm in pain later. Their love and laughter are SO worth it!

Mark met a lady though the hospital that has Celiac Disease. It's a disease that attacks the small intestine when you ingest gluten. The attacks damage the villi that helps your body absorb nutrients. In a sense it starves your body of very important nutrients. Her symptoms were very very much like mine, but a lot of autoimmune diseases mimic symptoms. Given the fact that every time I eat I'm having bad abdominal pain and bloating, I asked my PCP if we could run the test for it as well. I'm running over to Express Care tomorrow to get that lab done. I don't want any rocks left unturned, after everything I've been through!

I had my first Rheumatologist appointment yesterday and I feel like it went really well. I think we're getting closer and closer to a diagnosis. I just happened to be sporting a decent facial rash during the appointment so he got a little glimpse of it. He did an ultrasound of my hands and definitely saw some swelling near the joints, as well as a couple bone spurs on the two fingers he looked at. He is leaning towards Lupus, but because of my severely dry eyes and mouth it could possibly be Sjogren's syndrome, which is also an autoimmune disease. He believes that some of the pain in my legs could still be fibromyalgia but there is definitely a lot more going on. He is running some more autoimmune specific labs (ENA) to try and figure out more. I go back to see him in three weeks and fingers crossed we'll know more. He is starting me on a new anti-inflammatory, Nabumetone 3 times a day. Overall, I still have the diagnosis of fibro, some kind of autoimmune disease, and the possibility of osteoarthritis. The Cymbalta that my PCP put me on helps take the edge off of my legs, but I don't feel like it's doing much. I'll continue the trial for now. I'm still waiting on the results of my abdominal ultrasound. I should hopefully have those sometime today

I've had a little more energy lately, and it seems like my hair loss is slowing a little. I've been able to work on some homemade party decorations for Carter and Kayla's party, and I've been able to do the dishes twice this week. That is HUGE improvement. My hands continue to tremble at times, along with my mouth sometimes. I do expect to be sick this weekend unfortunately, because I'm psychic like that. My toes continue to turn blue when they are cold, and I haven't been sleeping well at all. My worst pain is always at night. That is also when I decide to have bad migraines. I am having more pain this morning compared to the beginning of the week.

Mark and the kids are going camping this weekend with cub scouts, and I'm hoping to at least make it with little mister for the day on Saturday. It all depends on what the weekend brings. Carter's birthday is on Sunday- 7 already. I can hardly believe it!!