Sorry that I’ve been M.I.A. lately, but (as per usual) everything has been hectic once again. However, I wanted to check in with you all and provide some updates as to what’s been going on in my life and with my health.
First off, thank you to everyone who has followed along with my blog this past year and to all the new readers who have spent time browsing and viewing everything I have put up on the blog (especially those from the Nutcracker Syndrome Group Facebook Page- and thank you to Margreta for her wonderful research skills and for finding/linking to my page). I have a lot of great information currently saved that just needs to be edited and posted, so hopefully all of that will be up live on the page here soon. Also, this week is super exciting because it’s the 7th Annual Wear Purple Day Event for SMA Syndrome Awareness but more about that later (see details below).
As most of you know, right before the holidays I took a short break from medical testing, doctors appointments, and school. 3-weeks off?!?!?! While I was hoping to be super productive and get so much done during this time, I sadly spent almost my entire break in bed as I was knocked down hard by an extreme flare that -even now- I’m still not completely over. It’s been an awful couple of months for sure and most of my days have been spent sleeping rather than doing much of anything else. Quite disappointing. Then with school and appointments starting back up, I already feel like I am so far behind on everything. Not to mention, I’ve had a couple hard blows from some of my doctors and with my disability claims already this year. So, needless to say, 2016 has been far from a perfect start. Likewise, it hasn’t been overly exciting either.
At the beginning of January, I submitted the last of the documents that were requested for converting my short-term disability plan into long-term, although my STD claim ended the first week of December and I have yet to hear anything in regards to a decision. I do know that they sent my case for medical review and I’m guessing that’s not a good sign in terms of getting approval. I knew when I received the other denial letter from my first STD case that they were setting up to deny my long-term (or, at least, it seems like it anyway). Financially it’s been tough, but somehow we’re making it through – at least, for now.
Also, I’ve had some follow-up appointments with my both primary care physician and my gastroenterologist, as well as continuing the usual weekly appointments with my therapist. My bloodwork and urinalysis were showing some irregularities at the start of December, so we re-ran those labs hoping to see if there had been any changes that could perhaps lead to a diagnosis for the underlying skin/allergy/systemic disorder that nobody can seem to figure out. Like usual, though, my tests came back normal; except for finding protein and urobilinogen on my urinalysis and the low vitamin D levels and a decreasing eGFR rate in my blood serology. However, the good news is that my amyloidosis protein serology came back negative and my cortisol levels (which were low over the summer)are within normal limits again. My primary care had ordered an ultrasound of my left kidney last week to make sure nothing else was going on, but the hospital informed me yesterday that my scan was normal as well. So no more answers, but no change in diagnosis at this point either.
My GI appointment is a long story, so I’ll have to save that for another time. In fact, I plan to use it as an example for my follow-up post to The Good Patient (Part 1 of 2) – The Bad Patient. I bet you can see where I am going with this. Also, I have some other things I want to discuss in regards to my psychological evaluations and appointments in therapy, but that will have to wait until I have more time as well. The next few weeks are hectic, as I have more labs and medical tests ordered. Next week I am scheduled for more blood screenings, a 24-hour impedance and pH study (since I couldn’t complete the first one), and an anorectal manometry – how miserable, really. I’m also waiting for the hospital to call so I can schedule an MRI Abdomen/Pelvis (which I have not had before) and then I go for a tilt-table test on March 1. After all, of that is said and done, I will then follow-up up with my PCP, GI, and Cardio doctors to discuss whether or not to move forward with the surgery that the vascular surgeon recommended for the Nutcracker Syndrome. I’m sure more things will come up between now and then, but that’s the plan so far.
Aside from all that, it’s just making it through another semester in school and learning to somehow manage my symptoms, but that is becoming harder as time and time goes on. Does that sound like I’m doing enough to you? Some days I think so; other days I feel terrible for not doing more with myself – oh the dreaded guilt of chronic illness.
Finally, as I mentioned at the start of this post, this Thursday – January 28th- is the 7th Annual Wear Purple Day to promote SMA Syndrome Awareness. It’s an online event, but everyone (both patients and non-patients alike) are encouraged to join the event via the SMA Facebook Page (linked here) and post fun pictures of you or anyone else wearing the color purple that day in support. For more information, you can either send me a message through my blog, Facebook, or email accounts or you can message the event page directly. Please share with your friends, family, co-workers —> everyone and anyone that you know. Too many SMA Warriors have been lost this year and it’s important to bring awareness to this condition. I’m hoping to be posting videos, photos, and research both here and on the Undiagnosed Warrior Facebook Page starting tomorrow.
[Taken from the 7th Annual Purple Day for SMAS Page and written by Marge Reed (for the 4th Annual PURPLE Day- 28th Jan, 2013) and (slightly) adapted for the 5th Annual PURPLE Day, on the (28/01/2014), by Maria McMillan and again (updated for our 6th Annual event from 28/01/2015 to 30/01/2015) and updated for our 7th Annual PURPLE Day, Jan 28th to 31st, 2016.]
THE STORY BEHIND PURPLE DAY:
"On January 28, 2010, my friend Samantha Mina traveled 800 miles from Virginia to check into the Florida Mayo Clinic for SMA Syndrome. An innovative SMA Mom Maria McMillan decided, before Samantha's departure, to ask friends and fellow survivor families around the globe to wear purple that day to show their support for SMA Syndrome sufferers. With hundreds of RSVPs and dozens of uploaded photos of purple-clad people, the first annual Worldwide SMA Syndrome Awareness Day was born. Then nearly 1000 people attended during each 2011 and 2012, praise the Lord! Indeed, the past couple of years were marked by leaps and bounds in global SMA Syndrome education and when the documentary style TV show "Mystery Diagnosis" scouted Samantha and featured her story on the Discovery Health Channel on 83010 the survivor support group swelled to 1200 members.
At 8th January 2014 our Awareness group now has 1508 members!
As at 4th December 2014, our Awareness Group now has 1756 members!
*As at 18th December 2015 our Awareness Group now has 2113 members*
We had almost 1400 attendees for our 4th Annual PURPLE Day, Jan 28th, 2013! (Inclusive of 'Non-Facebook attendees).
So, to celebrate all the incredible progress in SMA Syndrome Awareness that has been made thus far and to encourage its continuation in 2014 we invite you to participate in the 5th annual worldwide SMA Syndrome Awareness day on Tuesday January 28 2014 (to Thursday 30th January, 2014), to allow for global time differences, by simply wearing a purple article of clothing and/or a purple ribbon, or a whole purple outfit, if you wish! Please feel free to take a photo of yourself to upload to this page.
And now, we invite you to attend our 6th Annual worldwide SMA Syndrome Awareness Day on Wednesday 28th January 2015 to Friday 30th January, 2015 (to allow for global time differences.
We had 3991 attendees for our 2015 event!
*And now, we invite you to our 7th Annual 'PURPLE Day' from Thursday, Jan 28th to Sunday, January 31st, 2016*
Thank you for sharing our 2016 event both on Facebook and in the 'real world'.
(Once again, you can join the event here)