Hi there! September was really a crazy month for me… I really missed blogging, and as much as I wanted to take pictures and put together a new post – *life* got in the way.
Here as some highlights from the past month…
Sept 13th: My 23rd Birthday!
yes, I am now 23!!! crazy, huh? I definitely don’t feel like I’m 23 – it has surely been a crazy 22nd year of m life. I went out to small dinner at pf chang’s, with just my parents and Bryan – It was really nice to just go out to eat as the 4 of us… my family usually has really large get togethers for birthdays – but honestly, I know this probably sounds somewhat self-centered/selfish, this entire past year I have been very sick and I almost felt as if I didn’t even want to celebrate my birthday because I’ve had such an awful year – but on the same note, I’ve exceeded expectations as well – my doctor said I’d never be able to walk without a walker or be without wheelchair (yes, at 23!), but here I am…walking and hopefully one day I will be running again =) Anyhow, there wasn’t any birthday cake and I didn’t even take any pictures of the dinner – but it was great being with three people that have helped me survive the past year. Hopefully this next year will make up for the last!
Sept 17th: Johns Hopkins Myositis Center
I finally managed to be seen at the Johns Hopkins Myositis Center in Baltimore, MD. I had been waiting for that day for what feels life forever. It was wonderful being there, however at the same time it was such a long, painful, and tiring day – but in the end it was all very worthwhile!
I had an EMG (some type or neurological needle test), an MRI, and a cat scan – then I was seen By Dr. Lisa Christopher-Stine and a rhuematology fellow/post-doc sudeny. I talked with the rhuematology fellow for at least an hour, going over my extensive medical history – in excruciating detail. Its crazy how well I remembered everything from the top of my head. I did make some notes to share with them about my history, but I ended up not even needing them.
At the end of my visit – my previous diagnosis of myositis was confirmed, although its still uncertain as to whether I have polymyositis (+lupus) or dermatomyositis…. most importantly, I also got a *new* treatment plan:
- start taking Imuran (an immunosuppressive agent typically given to people who receive an organ transplant)
- 2 weeks of Intravenous immunoglobulin (IVIG) therapy, once every four weeks for 5 days
- re-start physical therapy once my blood chemistry and muscle enzymes begins moving *towards* normal
It may take an entire year to feel the effects of Imuran, but I should be able to notice a difference from the IVIG therapy within days of finishing the infusion. I have been taking the Imuran for a couple weeks already – I’m definitely not happy about the fact that I may have to be on this medication for a long period of time – but it also gives me some hope to get tapered off prednisone sooner (a toxic drug that depletes your bones of calcium). So far the only side effects I have noticed is that it reallllly upsets my stomach, so I may not be able to tolerate it for too long.
I know this part of my life may seem somewhat irrelevant to my blog, but its a HUGE part of my life. Everyday I deal with the limitations of this disease and try to discover new ways to enjoy life, despite fighting to just survive each and everyday. If there’s anything I’ve learned from this whole experience, its to be more thankful and appreciative for each and ever second of my life that I do have =)
Sept 20th: broken camera and iphone!
Anyone that knows me also knows that I don’t go anywhere without my pink 0.5 L camelbak water bottle. This water bottle is probably the only way I can manage to drink so much water everyday, and I never had to worry about spilling any water in my purse… or so I thought.

Just as I do everyday, I put my camelbak in my purse and headed out of the house. I left my purse in my car for not even an hour, when I came back – I saw that my previously completely full water bottle was empty and now all that water had spilled all over my purse, soaking my new iphone and my sony camera
Luckily I bought the accidental warranty package from Sony a couple years ago when I got the camera, but the downside to that is that I have to send it out to sony and wait for them to repair it, or send me a new one (hopefully they just give me a new one!).
My iphone on the other hand… I had to buy a new phone. The water damage sensor/indicator or something was on and the people at the “genius bar” told me the only choice I had was to buy a new phone at a discounted price – which was still $199 =(
Bryan and I recently found this amazing restaurant thats just a few miles away from us – I have driven by it countless times and never even known it existed!
Bryan and I were really excited to try this place out after glancing over their menu online – I had my eyes on the Shrimp and Rice Salad.
I have been told countless times that I need to be eating a gluten-free diet for two reasons – it will tremendously help my stomach issues and it will maybe even help manage my polymyositis (both celiac disease and polymyositis are autoimmune diseases – its actually common to have more than one autoimmune disease)
….anyhow, their food can best be described exactly as they describe it: as Classic American Cuisine with A Healthy Twist.

best of all, the allergy-sensitive menu includes gluten-free, dairy-free, vegan and vegetarian options =)
Bryan and I called ahead to see if dogs were allowed on the outside porch, I was pleasantly told that I could bring my small dog, Lilly – of course! As soon as we were seated, the waitress brought us and Lilly some water! Its nice to find a dog-friendly restaurant that even has small bowls just for dogs.

Bryan and I had the hardest time deciding on what to order as our appetizer – we couldn’t decide between the Avocado Bruschetta or the Chicken and Vegetable Tostadas.

Thankfully, we ended up ordering the Chicken and Vegetable Tostadas, but next time I want to order the bruschetta.

the tostadas were amazing!!! The chicken was very tender and the filling was absolutely delicious!

For my entree, I ordered the Shrimp and Rice Salad (Cold marinated shrimp and long grain rice, infused with turmeric and coriander, with carrots and raisins)… this was really delicious as well. I loved the combination of the spices with carrots and raisins; it was perfectly tasty and filling.

Bryan ordered the Angel Hair Pasta with Shrimp and Asparagus (lightly sauteed with tomatoes, mushrooms, garlic, fresh herbs, and fresh parmesan cheese), which actually came with his choice of a side (sauteed mixed vegetables), but I can’t seem to find the picture. Bryan loved this pasta – he was very pleased that it actually came with a generous amount of vegetables, not to mention the incredible sauce.

after all that food I didn’t have room for dessert…. until I saw they had gluten-free carrot cake on the dessert menu!!! Carrot cake is my absolute favorite dessert, but I usually feel sick after eating it. Bryan and I made room to have some of this carrot cake, and we are sure glad we did because it was just what I had imagined carrot cake to be – there is no way to tell the difference between this gluten-free carrot cake and a regular carrot cake. Bryan may have also gotten some homemade banana pudding ice-cream – but I stayed away because I don’t really do well with too much dairy =/

Lilly was even served some complementary ice-cream while Bryan and I had dessert!

Overall, it was a wonderful dinner – I can’t wait to go back there again. It’s nice to finally find another place to add to out list of restaurants that we usually go to. We will probably end up eating there again this weekend, to somewhat celebrate the start of my new treatment (IVIG) that I start on Monday =)
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this was a monstrous post! It has taken me such a long time to write it too, I just kept finding more and more pictures to add.
This next week I hope to get caught up on reading all your blogs and also start posting much more regularly… I think with starting the infusions next week, I will have a lot of free time – so the least I can do is get caught up! I am also itching to bake something soon too – maybe more blondies?? perhaps I will mess around with some gluten-free flours…
Any advice for gluten-free baking???
I just want to say how thankful I am to be part of such an incredible blogging community – you all have touched my life and been such an invaluable source of support – thank you =)
xoxo,
Jasmine
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