update

Since leaving the hospital, I've been sleeping constantly. I mean almost all day and all night. I have queued posts on tumblr, but the queue doesn't work on this host for some reason. Please check tumblr until further notice of my recovery. Aside from flaring and pain, I'm healing well with no infections or complications :)

Back to sleep..!

    

Leighton Creations: My Other Passion

Taking a break from everything chronic illness related to share with you my other love, designing jewelry. I'll be posting my jewelry site shortly, but in the mean time, I leave you with a peak at my latest creation. Excuse the cell phone photo:

Sterling silver chain, swarovski pearls wrapped in sterling wire to resemble a nest. Currently taking orders so if anyone is interested, shoot me an email.

Personal Update

Just spent three hours with my spine surgeon…who I kind of bombarded without an appointment. I’m sure his office staff thinks I'm crazy. As always, he accommodated us and stayed after hours to discuss everything. I feel 20x better after letting him know how detrimental all of these mishaps have been to my health and how I have literally no life since going off of my DMARD.

I think after speaking to Nurse K (the one with SLE) yesterday and me reiterating it to him, he fully understands the whole chronic illness bit more so than he did before. Dr. J said he would do the surgery on his day off if he has to, the problem is the other surgeon, Dr. D, who has a “busy schedule” and isn’t exactly accommodating, but my surgeon insists he will push him to clear his schedule for Friday or sometime this weekend. He’s chief of staff so he has some power over Dr. D. Can I just call him Doctor Dick? Okay then.

Off the record, Dr. J isn’t a fan of Doctor Dick’s personality or bedside manner and is appalled at how he spoke to me (he also apparently told him to cut the shit out after he heard about yesterday), but because my anatomy is so complicated and we’re unsure of what is actually in there (scary right?), he wants “only the best” to perform the thoracotomy and Dr. D is as good as it gets. I trust Dr. J’s opinion and appreciated his willingness to go out of the way for me.

I’m anxious about possibly having to take another semester off of school, but I feel better about the surgery.

I’m in good hands this time around.

Ginormous thanks for the kind messages and words of encouragement :) I’ll get back to you all by tomorrow,

Surgery Was Canceled. Again. For the Fifth Time

 My surgery has been called off for a fifth time, only this go around I was only feet away from the operating room.

I have reached the end of my rope. This will be long so I don’t have to explain to friends and family what happened 100 times.



A big thanks to the support and love, both online and from friends and family. I’d never be as strong as I am without you all, and I am so very grateful.

Surgical Hiatus: Wish Me Luck!

Trying to get everything in order for surgery and my return home late next week (hopefully), and filling up the queue with a ton of posts/quotes/articles to keep you all entertained for two+ weeks. The queue will definitely work on tumblr, however I am not too sure about blogspot. Check tumblr for daily updates if you do not see posts coming up here, and I will fix errors when I'm back in action. 

I will answer your questions when I get back and am able to use a computer or focus, and a huge thank you to everyone who has sent kind messages both here and on facebook wishing me well with positive thoughts or prayers through my surgery! You are all so wonderful and I will respond to each of you individually when I’m home.

I leave early Monday morning at 4:45 for the hospital. My check in time is 5:45 and my surgery is scheduled for 7AM sharp. They have assured me I will be given oxygen with a sedative to keep me calm or knock me out so I don’t have an anxiety attack or throw up from nerves like I did last time (granted, I was eleven, but still), so I am not too worried. I think I’m probably dreading the foley catheter just as much as the actually surgery and recovery (how pathetic is that?). Looking forward to putting an end to the whole ordeal. It’s going to be a long road, but at least I am moving forward :)

I’m off to spend the rest of day relaxing with friends and family. I will update the facebook page when I am first able to alert friends, family, and followers that I made it through surgery okay without problems.

I hope everyone has an easier week than I will be having! Talk to you all in a week or so,

Emily

 Feel kind of awkward with my boobs all up in your face (not sure why the x-ray is like that…), but this would be my wonky spine that is causing me so much pain. The rods go farther up (this is only mid-spine and the black bar is there because the x-ray screens were separated) and the lower spine is completely contorted in weird directions. That short rod is pressing against and irritating my diaphragm. Can’t wait for the rods to finally be OUT of my body come Monday morning!

Surgery on Monday the 19th: What You Can Expect While I'm on Surgical Hiatus

Tumblr queue will be stocked since I’ll be taking a break to have and recovery from a huge spine surgery starting Monday, the 19th. I’ll be in the hospital for a minimum of a week, so I anticipate taking a three week break, possibly longer. I haven't used blogspot's queue and hopefully it will work, but if not I'll update after I am home from the hospital. Coming up in the four weeks:

• Multiple Weekly Link Roundups that are lengthy to make up for being so overdue— one specifically geared towards Scoliosis
• Surgery 101: How to mentally prepare for a major surgery, how to prepare for recovery time after surgery.
• Book review of Enemy Within by Karen Ager (a must-read)
• Book review of How to Be Sick by Toni Bernhard (another must-read)
• Announcing my two jewelry lines, one of which focuses on awareness jewelry
• Part II of my College and Chronic Illness: Preparing for School series
• Finally launching The Pre-Med Patient, which has taken a backseat to everything else lately (reilareila, know that I have you in mind :)
• Finishing blogspot layout and custom logo designs
• Post/discussion Painkiller 101 FAQ

And a ton of other great stuff will be queue’d up. As always, please like and share the facebook page with your friends. Spreading awareness and sharing the content of Chronic Curve with others is the goal :) It’s possible that I will be updating facebook after surgery to let friends and family know how things went— another reason to check CC Facebook.

Hope everyone is well,

Tonight one of my friends, who has known about my illnesses for about six months now, thought I had osteoarthritis. Specifically referencing the elderly people on commercials.

I think you can imagine my reaction. Just had to share this with you. After the shock wore off, we had a good laugh over it. Nonetheless, it highlights the issue of how misunderstood and how poorly represented autoimmune arthritis is.