Alone.

   It's been quite a while since I've updated everyone, but it's most definitely been with "good" reason. I've had a lot of changes in my life recently; things happened that were out of my control, things which forced me to make some decisions I never wanted to have to make.
   I'm not going to get into the details of it, but suffice it to say that my relationship with Luke ended over a month ago now. I subsequently packed up my things and headed to Ferrisburgh (Mom and Dad's) with my fur-baby, Clark. I found and still continue to find myself in a place that I never thought I'd be. Sure, whenever you get into a serious relationship, there is ALWAYS the risk of it ending...but who in their right minds actually expects that to happen? Minus the legal documentation, (at least it felt like this to me), we were essentially playing the roles of an old married couple - we were living together, grocery shopped once a week together, took turns making dinner depending on what our work schedules looked like, had our "kid" and all of the things that go along with taking care of an 11 year old golden retriever.
   Having to leave tore me to pieces. I like to tell myself that I don't break, that I'm strong enough to get through anything, that although this huge part of my life was over, it wasn't going to destroy me. I'm a good liar. 
   Today was especially hard for me, and most likely the reason why I'm sitting here spilling my thoughts and emotions via my blog - I need to get these things out of my head and I don't have the outlet I used to. For the last month, whenever I felt bad I'd get on Facebook and put up a post that was either a good quote, or some song lyrics that I KNEW Luke would understand as a signal to him that I was feeling awful and wanted to talk. Just like clockwork, he'd message me and we'd talk and I'd feel better in that moment...and then even more like garbage later on. This has been our "break up routine" since we started hanging out eons ago...we communicate via Facebook posts and song lyrics. Ridiculous, immature and really dumb? Yeah, most likely. But it's what we did and it "worked" for us.
   However, I knew this terrible cycle needed to end. Neither one of us was getting anywhere, and more likely than not, we were continuing to hurt one another more. If I was serious about this relationship not having any current hope for reconciliation, then there was one move I could make, and it needed to happen. Social media communication needed to cease. Luke had wanted it all along; at first it felt like a slap in the face to me, but I eventually accepted it and understood where he was coming from although I didn't necessarily agree...after hearing my point of view he chose to keep the communication lines open. Now, a month later, I understand completely and entirely why he had wanted it all along - you can't watch your ex-significant other continue their life without you and not feel like you're missing something or constantly being blindsided by the things going on in their new life without you; unfortunately, social media has allowed us this 24/7 instant access into people's lives and made is so much easier (or harder depending on the circumstance) to bare witness to the on-goings of those we are "friends" with online.
   I couldn't put myself through it anymore, so I drafted up an e-mail and sent it along to him, hoping to not completely blindside him with the un-friending move. I met some well deserved resistance in response to the email, but the way I see it - I am the ONLY one looking out for and taking care of me. This is something I needed to do to heal ME and if it makes me a hypocrite and/or selfish, then so be it.
   Today...has been the LONELIEST day I've had in quite some time. The story of "Luke and Chels" has been going on for close to three years now...and this is the first day that I haven't had instant access to him since June 2010. Not only did I lose the man I thought I was going to marry out of this break up, I lost my best friend and "person". I was petrified to put all of my eggs into one basket with one person, but saw the potential I wanted in him and did it. Took a risk. And here I am. Emptiness has set in; I cut off my access to the one constant I've had for the last three years of my life. But it was something that I had to do...the pros outweighed the cons in this situation, unfortunately. Watching my ex with his "new life" that didn't include Clark and I, was too harsh for my fragile soul to handle.
   NONE of this is to say that he's not hurting too, nor is he not feeling any of the same things that I am. I know that some of you reading this are mutual friends with both of us, and I don't mean to discredit his feelings at all; this is just my side of the story. What makes it worse is that of course I still care, so knowing that someone you care about is going through some of the same feelings and pain that you are and there is NOTHING that you can do about it because that isn't your place anymore...at least for me, makes me feel worthless.
   I don't usually feel this lost. But today, today I feel like a puppy wondering hundreds of acres of woods looking for her owner because she took one wrong turn and is completely overwhelmed by all of the trees and leaves surrounding her with no clear direction in sight...

   ~Somewhere between always and forever, Chelsea Leigh

Defeated

   Today I learned a harsh lesson in self-defeat. Many of you are unaware of this, but I am now completely on my own in terms of my care and Cinryze administrations. At first, it wasn't a big deal to me; it was definitely more of a "YAY ME" moment, knowing I could do this huge, life sustaining, thing for myself. Or at least I thought.

   Until today.

   Maybe it was because it was a mere 55 degrees in my living room (I don't like paying high heat bills, whatever), or because I haven't been taking particularly great care of myself in the past few days, or just the pure frustration and anxiety that's been soaring through my veins in the aforementioned few days...whatever it was, it wasn't good. I was feeling all cocky and decided to go for the notoriously "hard and rolly" vein that Luke used to stick for me - but! got on the first stick the last time I tried it - and failed semi-miserably. I got blood flow (GOOD sign) and then advanced the needle just a touch to make it more secure, and completely blew through it (BAD). So I tried to regain access in that vein and after three or four failed adjustments, decided it was time to try one of my other "better" veins.

   Next vein, one that I've NEVER missed...one that a toddler would have a hard time missing because it's so easy to stick...proved to be a serious pain right in my ass today. Again, got blood flow after the immediate stick and then when I was trying to trade out the saline flush for my actual medication, lost the vein AGAIN. After more failed attempts at adjusting the placement, and getting increasingly more frustrated and almost on the verge of tears, I decided it was more important to get my medication into my blood stream than it was to worry about the fact that I was going to have to use the same vein twice in a row.

   So, I went to my trusty left AC vein and it was magical how easily the needle went in and STAYED PUT. However, now I have THREE punctures just from today to let heal over the next few days...my poor veins. Hopefully today was just a fluke and a jumbled up mess of frustration, upset, dehydration and cold and isn't an indicator for how the next few weeks and months are going to go while I face the harsh reality that I've gotta do this on my own.

   Today I experienced emotions and feelings I haven't in a very long time. Fear, wanting to give up, twinge of hopelessness combined with pure frustration and disappointment because I NEVER get things wrong THAT many times in one shot; I also felt very, very alone. Usually independence and strong will for myself are my thing, but today, it was put on the line and tested. I felt weak and scared. However, I also had the sense to kick my own ass and tell myself that it was time to suck it up, deal with the cards I've been handed, and make the best of the situation. My health and life, really, are more important than anything and this is the ONLY way for me to sustain it at this point in time. No more feeling sorry for myself, and no more self pity parties. Like one of my tattoos says - Alis Volat Propriis - and it's time to do just that.

   Stay tuned for more updates on my newest adventure...

   Somewhere between forever and always, Chelsea Leigh

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. 

Rage.

   Tonight, I'm ANGRY. I'm on a hormone surge that feels somewhat like what I imagine the Hulk feels like right before he starts morphing into the big green guy. I've been down all day, warding off a crying fit - which while you're surrounded by a bunch of females at work who are all mothers and insanely intuitive, is NOT an easy task. Mind you all, this crying fit, was prompted by my realization that I'm going to have essentially permanent bruises on my inner elbows, and junkie-esque track marks to boot. Now THAT'S super, mega hot.

   After I got home, my sadness turned into anger and rage. What caused the mood swing, you might ask? I was surfing around Facebook and noticed that Luke had "liked" a picture of an old girlfriend (we're talking 5 or so years ago). BIG FUCKING DEAL CHELSEA, YOU'VE DONE THE EXACT SAME THING BEFORE, IS THIS SERIOUSLY WHAT YOU'RE GOING TO LET CAUSE A PROBLEM TONIGHT?! is the current line going through my head. It's like Jekyll and Hyde up in my noggin, I tell ya - one part says it's okay for me to be insane about things that don't matter, such as my boyfriend "liking" a picture of someone whom he hasn't even spoken with in months and to go ahead and freak out about whatever I want because for some reason I'm entitled; while the other part tells me that in about 20 minutes this all will be over, I'll be back to a more plateaued state, and will look back and realize just how out of control my emotions and thoughts were minutes previously. I just need to ride out this roller coaster until then... 

   

   Welcome to my life.

   

   I proceeded to shut myself in my bedroom in an attempt to hide after realizing the picking-a-fight-over-nothing state that I was in - I am especially good at this. I was finally found, and started crying my eyes out because of all of the feelings overwhelming me. I'm in withdrawal. I have no control over what I'm feeling - can't turn anything off, or shut it out like I usually do. I'm exhausted, feel like I got run over by a bus despite the full nights' sleep I've been getting lately. I have no energy to do anything, but know that there are lots of things I need to do. I'm stressed about the holidays coming up, and just life in general because I'm good at worrying about things that are years down the line.

   I'm so angry that I have to deal with this. Going through withdrawal. Everything is heightened. Having bruises and marks on my arms that I can't hide, likely causing people to ask me "what's wrong?", which I don't mind answering, but I also don't want the one-uppers (yeah we all have them) doing their thing and making it seem like their ailment is so much worse - that's part of why I hid this for so long. Sure, it's nice to have support coming from places I never even dreamed of; but what REALLY pisses me off are the people who are listening to my story and either butt in, or listen to the whole thing and immediately reply back with how their lives are so much worse. I completely understand that most people have some shit to deal with, on an at least semi-regular basis, but you know what? I didn't ask what your issue was. You asked me. DON'T try to one-up me. Just don't. Because you piss me off and make me regret telling you in the first place because you make it seem like this doesn't control my life and isn't a big deal.

   Newsflash - this controls my ENTIRE life and is a HUGE deal. It's almost second nature to me now, but there was a point in time that I had to consciously think about every move I made and whether or not it was likely to result in a swelling episode. I'm usually a trooper about it, putting on a good face and just agreeing with people when they brush my issues aside. Today, I can't. Emotions, hormones and YEARS of harboring it in have let the flood gates crash wide open. I HATE that I have to deal with this every single day. I HATE that I have absolutely no control of what's going on with my body right now. I HATE that my options were to take steroids every single day and deal with the side effects, or need an infusion once every three days that will leave me bruised, scarred and dependent. Of course the latter option is better and I'm thankful that it is an option for me now, but in reality, it still SUCKS. And I'm LIVID that I don't even get to choose anything other than "deal with it."     

   I have a great support system; they will make me hold on even when I'm ready to let go and fall...which I've already been incredibly tempted to do. I know this will be better once the ride is over, but I'm ready to get off now. Hurry up, steroid free living, I can see you on the distant horizon...

   ~Somewhere between always and forever, Chelsea Leigh

Withdrawal

   Over the past few days, I've been asked by many people how I'm feeling - if I'm noticing a difference based on the new medication I'm on or not, usually followed by the question, HOW will I know it's working? What's interesting is the answer I have to give. I've been feeling fairly normal this past week...and that's pretty much the only way I'm going to know if the medication is working. I won't notice an actual change of symptoms per se, as one might expect; what I will "notice" however, is that I WON'T be having symptoms or full blown episodes. Yes, it does sound strange and kind of backwards from what you'd expect, but that's pretty par for the course in my life.
   Normal. To me, "normal" would be NOT constantly being afraid of minor activities throwing me out of commission for a few days due to immense swelling attacks. Normal would be NOT having bouts of sickness where my stomach does the weird, strange thing that it does - it's a sensation that I can't describe in words to anyone else, it's just a feeling that I have and I know what it is when it's happening. I used to get really frustrated with anyone who would complain about their lives being boring, or normal; it seems like a minuscule thing, but it's something that a lot of people take for granted, something that a lot of us aren't lucky enough to just have every day. Maybe it seems silly or ridiculous, but speaking as someone who would do unspeakable things to experience normal on a daily basis, if you're lucky enough to have normal - don't take it for granted, you don't know how precious it is.
   I'm not there yet, but I'm hoping (and the outlook finally is a really good one) that within a couple of months I will be one with the masses.

   The next piece of my journey is coping with steroid withdrawal and it's subsequent symptoms. Common withdrawal symptoms from steroids include weakness, fatigue and sleeplessness. Oh yes, count me in for the whole TRIFECTA. Add on top of those three, an emotional roller coaster and I feel like what I imagine a pregnant lady immediately going into menopause would be like hormonally, if such a thing were possible. I spent the majority of yesterday fighting off a teary break down, for no reason in particular - other than that I'm a week into knocking my steroid dosage down from 1.25 mg/daily, to 1.25 mg/every other day.
   Hormones are a finicky thing, and aren't anything to screw with. I'm psyched to be on this new journey and a lot of other things in my life seem to be falling in to place, so I'm on happy-high...but my medication is currently doing the emotional driving and dictating how I feel and what I'm able to express. I cannot WAIT until I reach the plateau I'm hoping is in my semi-near future; I'm sure Luke is right there along with me, bearing with crazy-girl syndrome in all it's glory, and being a real trooper.
   Hopefully I'll be able to curb the exhaustion, but I foresee a very restful next couple of months coming up. I'm not currently doing a great job of fighting off  the "hit by a bus" run-down feeling, as I write to you from the comfort of my bed, glass of OJ to my left and a sleepy golden retriever to my right.
   I have infusion number three tomorrow, flying completely solo and Ginny will be here later in the evening to discharge me from visiting nurse visits. I just have to keep on trucking through, beat the steroid withdrawal and then things should be smooth sailing from there on out.

   ~Somewhere between always and forever, Chelsea Leigh