I'm FREE!

   This post comes (almost) a week into being 100% steroid free! This is the first time in over six years that I can say I have nothing flowing through my veins that wasn't naturally intended to be there, and I'm feeling amazing.

   I expected that once I removed the rest of the steroid doses that my body had most recently adjusted to, I'd once again go through a transition period of emotional ups and downs, insomnia, lethargy and feeling incredibly unstable. However, fingers still crossed, I think I'm over the proverbial hump and on the plateau that will be my "normal" from here on out.

   Today, I learned that it is common for people to experience/notice the worst withdrawal symptoms during one of the "steps" in a graduated removal of a medication, as opposed to when they're completely medication-free. Both ideologies make sense to me if I sit back and think about it...I had just prepared myself for another round of crazy, and wasn't expecting this as an outcome.

   As a celebration of sorts for being "all-natural" per se for the first time in a VERY long time, I've once again put myself back on track to get fit. Granted, most of my adult life, I've been a really good eater - my meals are balanced and if anything are tipped more toward the fruit and veggie side - and relatively active; I mean, I haven't run a marathon (ever) or even a 5K in WAY too long, but I also haven't gained so much weight that I don't even have the motivation to get off of the couch.

   Part of the struggle I have been up against for a while now is even when I did really try, even when I put in the effort of going to the gym and counting my calories, etc, I wasn't able to lose more than 5 or so pounds. No, I did not give up too quickly, I stayed at it for months. The issue was that I was taking medication prescribed to people to help them GAIN WEIGHT post surgical procedures. Yeah, I could've kept up "the hard work" and maybe it would've "paid off" but when you're actually trying and not seeing any results at all...it's pretty damned discouraging.

   I've looked into quite a few fitness and clean eating blogs, and put together (a very minor version compared to some people) a plan that I'm hoping will work for me. I'm planning on starting out small, because I've tried the "just throwing myself into the gauntlet" approach before and it just DOESN'T work; and working my way up to bigger tasks. On my list of things I WILL DO THIS YEAR is participate in at least one 5K, and run it in under 30 minutes - ideally I'd like to be around 24, but we'll see where I end up...my cross country training days are years behind me and I've got a lot of ground work to cover before I'm anywhere near back to being in that shape again.

   I'm at a point in my life that I wasn't sure was ever going to be possible for me to get to, and that is an absolutely surreal feeling that I'm not sure I've come close to grasping yet. Part of me feels like I'm still waiting for something to fail and prove yet again that I only attract bad luck; but the other part of me is going to ride out this incredible feeling and new found freedom that I've never EVER experienced.

   Cheers!!

   ~Somewhere between always and forever, Chelsea Leigh

New Information

   After a chat with Beth Ahern at ViroPharma (who seemed THRILLED to have to talk to me), I was able to get to the bottom of where the information regarding my withdrawal symptoms came from. An email I exchanged with my patient care coordinator - basically they have control of my medical info and contact my insurance, the pharmacy, the nursing coordinator, and anyone else behind the scenes that I'm completely unaware of - where I mentioned that my infusions were GOING GREAT, but since I was down to half of my normal steroid dosage I was starting to notice withdrawal symptoms. I had completely forgotten about this email and wasn't aware that any negative information would be forwarded to the drug manufacturer regardless of relevance.

   So. The information wasn't taken from this blog, which was annoyingly pointed out to me by ViroPharma (no shit, Sherlock, I just wanted to know who gave YOU the information); and I likely overreacted with my previous post. That being said, I'm not going to apologize, because I felt my personal information had been wrongly given and I was understandably upset.

   I promised to keep you all updated once I got to the bottom of it, so there you go. Thanks for the support, as always. You guys are all amazing :)

   ~Somewhere between forever and always, Chelsea Leigh

IMPORTANT!!!

   I was just contacted by my doctor's office stating that they had received an incident form claiming that I had been having reactions to my Cinryze treatment. This form was submitted by a pharmaceutical company of which I've never heard of, and I am working to get to the bottom of the information trail. 

   In the meantime let me make a few things VERY clear to anyone who reads this blog:

• This is MY place to write about my PERSONAL experiences, currently relating to my health issues - I may vent, I may complain, I may seem like I'm shitting rainbows - regardless, this is MY place, MY domain
• For the record - I am ABSOLUTELY NOT HAVING ANY ADVERSE REACTIONS TO THE CINRYZE THERAPY I HAVE STARTED!!!!! Yes, I am going through some of the symptoms of steroid withdrawal, BUT THAT'S BECAUSE I'VE BEEN TAKING THE DAMNED THINGS FOR 6+ YEARS AND I NO LONGER AM. For Christ's sake, have you NOT read any of the other information correctly?!?! YES I am having withdrawal symptoms, I also was experiencing them when I tried to ween off of them previously WITHOUT Cinrzye therapy
• I am a grown woman and can take care of my medical and health concerns ON MY OWN. I do NOT need or want ANYONE ELSE trying to do that for me, especially and specifically someone who is unnamed and knows NOTHING about me other than what you read here
• I will find out who it was that submitted this information/form, and you will have hell to pay - you had NO RIGHT in doing so, and you completely violated my medical privacy. How you were able to take information from a blog and were able to carry it through to the point of a form being submitted to my doctor's office completely disgusts me and I'm doing some investigating into my medical rights because I have NO personal information available here other than my name, so clearly information was being given somewhere by an entity that DOES have access to it and I am NOT happy about that in the least

   This was supposed to be a way for me to share my story, and for me to get support from family, friends, and other people in my shoes. WHOEVER YOU ARE that did this, has completely ruined that for me, and quite frankly you've really PISSED ME OFF. You do NOT know who you just fucked with, but I assure you, you're going to wish you hadn't; if you felt so strongly in needing to help you could have at least ASKED me if it was something I was interested in pursuing first and I would've explained to you that you were not reading the information correctly, that the steroid withdrawal is NOT due to Cinryze therapy, but instead something I've been trying to get away from (steroid treatment) for quite some time and Cinrzye has allowed me to do so. COMPLETELY different than steroid withdrawal due to Cinrzye. How does that even make sense?   

   If whoever was involved in this process would like to own up to it, there are plenty of ways/means to contact me, so please do so. Unfortunately, this may be one of my last public posts because clearly, some of you assholes think you're above the system and are completely untrustworthy.

   Allow me to reiterate one last time - I do NOT need or want help. I have all of the help I need. Friendly comments and notes of encouragement are all I've ever wanted and been looking for here. 

   I've been crossed, and Hell hath no fury like a woman scorned, ESPECIALLY this one.