Spoke with my rheumatologists assistance today about being referred to John’s Hopkins University Hospital for further treatment of SLE but mainly for relapsing polychondritis. …she said my rhemy and her team sent tons of info and my records up there and she spoke with the rheumatology department to make sure they understand the severity of my condition and need to be seen ASAP. .she was told it would be at least 72 hours before case review but I might have an appointment scheduled already but wouldn’t get a call till Monday since it was almost 5pm when we spoke. She gave me the scheduling# there so I’ll be calling first thing Monday!my fiance and I have decided to take a train:)we want to make this trip a little adventure and we love to see the change of season, it should be nice. Been looking into housing for our stay but I obviously can’t make any reservations until I know my appointment date and how long we’ll be there. .it’s so crazy not knowing how long they’ll keep you!sometime s I’m at university of Miami all day for appointments and treatment but at least I get to go home. .I’m gonna miss my daughter sooooo much:(she’s so amazing and my reason for living…thankfully there’s good old technology and we can Skype lol…honestly I’m still numb over all this, it’s serial. …I’m really sick for real???the SLE, even though very severe for me, was acceptable but this cartilage diseases is bad news. .besides it destroying my hips, knee, shoulder and ribcage in lighting fast speed it’s spread to my laeranex, treacha, inner ear and is deforming the top of my ear. .and of course it’s excruciating!!I’ve come to terms with my mortality and that I’m very sick with a rare, incurable and very quickly evolving disease on top of SLE. . .I just hate all the suffering my family and I having to deal with in the meantime:(thanks again for all of your support and prayers. .Btw my birthday is in 6 minutes!!!xoxoxo
My prayers are with you. Happy Birthday!
Happy birthday and welcome to Baltimore! We've been having gorgeous weather here and the leaves are changing to all of their pretty colors. Hopkins usually has information on their website about places to stay that are reasonable and close to the hospital and transportation. I used to work there and most of the staff can hook you up with the right information about safe places to stay around the hospital. Please do be careful in the city though. the neighborhood around Hopkins is a little rough so just be careful and aware of your surroundings. Praying you get an appointment quickly!
Happy Birthday!! So sorry that you have so much going on so fast. Hope you get treatment right away and find some relief.
Prayers are with you!
Happy Birthday!!! And enjoy your trip to Baltimore!!! I went to JHU back in October of 2009 and saw Dr. Petri. She and her fellow aT the time were phenomenal!!! Unfortunately, I haven’t been able to get back up there to see her again, but I am hoping to soon. Hopefully they will be as helpful and informative for you as they were for me!
Best wishes!!!
Kim
Welcome to Baltimore! Hope all goes well with you. Praying for all things positive.
Happy Birthday! Hope all goes well. Just inhale all of the beauty around you. I'll be praying for you.
Tee said:
Welcome to Baltimore! Hope all goes well with you. Praying for all things positive.
Happy birthday and best wishes, Dawn. You have a wonderful outlook and I am glad that you are focusing on the good things that you can do and see. It is those small everyday things that make such a difference. Good for your fiancée being right there beside you. Blessings and prayers coming your way.
Happy birthday! I am praying for you visit at Hopkins to be fruitful and helpful.
Happy Birthday to you Happy Birthday to you Happy Birthday dear Dawnceleste Happy Birthday to you. Good thing you can't hear me singing. My thoughts and prayers are with you. Have a safe trip and enjoy the ride.
Cindy
Hope you had a lovely Birthday. Kaz xo
Thanks my friends for all my happy birthday and well wishes!!!you all are wonderful and comforting to turn to through these hard times:)xoxoxo
Happy birthday,I hope you have a great day,I’m happy for you,I hope they come up with some answers,and make you feel better,you and your fiancé can make it a nice little trip on the train,I’ve never been on a train,I’m a backwoods country girl,I should add that to my bucket list,it could be fun…I will be praying that things go really well for you!! Take care friend…celeste
My prayers go out for you! God will work this out for and yours…Beverly L.
Keep your spirit strong and keep your Faith…
Johns Hopkins, Dr. Petri and her staff are amazing! Wishing you the best results! That is where I had to go to get on track with Lupus!
Oh ya, Happy Birthday too!
Deenie