Sorry, I'm not sorry.

   Allow me to get this entry started with - sorry, I'm not sorry. I'm drowning with the thoughts in my head and need to get them out, which I do best when I can write. So, here I am. I'm probably going to offend someone with my viewpoints, and I'm ok with it because this is my space. If you don't like it, feel free to push that little "X" up in the corner of your screen and peace the F out.

   H'ok. For those of you who are still with me and my bitchy mood, hold tight, things may get bumpy and a little hasty.

   As you're likely well aware, I was born with what I like to call my "genetic retardation" (oops, less than 50 words in and I've likely offended 3.4 of you); it's something I've known would be a part of my life since day numero uno. Sure, medical advancements have made living with being "genetically touched" much easier and more manageable over the past 20 or 30 years, but at the end of the day, not being "normal" still plain sucks.

   I have triggers, I have boundaries, I have a list of "I wish I could, but can't"s. I'm aware of it all. I've spent literally my entire life tailoring my being around my limitations. Yes, I'm currently taking a medication that has made my life about a billion times better than it was up until six months ago; however, taking a medication that is delivered via self administered intravenous injections once every three days brings along its own giant closet of proverbial skeletons.

   Some of you who interact with me on a semi-regular basis may wonder why I do some of the things I do...things like carry around a calendar that is literally the size of a MEAD 5 Star notebook - the "Super Schedule" as Luke has so lovingly dubbed it - which contains a year's worth of my life at a time, color coded down to when my bills are due; green for when I work, yellow for anything to do with Luke (work, appointments), blue for my appointments and weekend fun things (basically places I need to be that don't involve work), orange for bills, and pink for birthdays. Or, when I'm at work - I like to arrange specimens in the walk-in refrigerator by size and sample type...everything has a workable pattern. I like my plates (the agar media we plant specimens to in an attempt to grow any bacteria that may be there) to always be in the same, specific order.

   Some people refer to my tendencies as obsessive, which I am the first to admit and will never deny. However, the bigger piece that took me going to a very expensive therapist to realize, understand, and come to terms with - I do these things because I can control them. I'M in charge of the pattern specimens end up in; I'M in charge of arranging the Super Schedule to MY liking, so that the information I need is visually accessible to ME in the best way possible; I constantly plan out my life, and have a hard time adjusting to a change in said plan if I've been looking forward to it, because it's something I AM IN CONTROL OF.

   I have zero control over my HAE. None. I have control over making sure I give myself my medication when I'm supposed to, but I have NO control over how my body will react to any triggers, whether the meds will be enough to counteract the issue, or if I will have an episode of mega uncomfortable swelling due to some asshole trigger my body couldn't handle. I never have had control over it, and I never, ever will. So, I control the aspects of my life that I'm able to in order to compensate and feel like I'm running my life...not some bullshit genetic defect that I was handed when it was my turn to roll the genetic dice.

   People wonder why I'm not religious, why I don't "have faith" in God; I should "lean on God's shoulder, especially given my "situation" and He will guide me through it; He doesn't give you anything you can't handle" - here's where things are gonna get dicey folks, hang tight or feel free to use the aforementioned "X" easy out. A) I was handed a "not-normal" card at day one IN UTERO - which we've covered extensively throughout this post so far, time to get on to the other "fun stuff"; B) I'm a scientist, I'm wired like a scientist, things need to make sense to me in order for me to believe them; C) I'm supposed to believe that there is a single "higher being" that has humanity's best interest at heart - so long as you're a good person in your community, help others, blah blah blah, you'll be rewarded for such..right? Then explain HAE. Explain cancer. Explain MS. Explain the death of my best friend who was the absolute BEST human on the face of the planet.

   I'm a scientist. Science makes sense to me - "I think this, I'm going to show you via this and that, and ta-da! Proof that my thoughts were correct." That's how it works, and to me, it makes sense. You have a thought, you prove it. Bada-bing, bada-boom. Done and done. If you can't prove it, or at least come damned close, I'm gonna have a hard time believing you and your "theories". Show me proof of God, and I'll be the first in line to jump on that band wagon. But...no one can. Sure, there's "The Bible"...I'm sorry, where did this thing come from? Supposedly, this book was formed by all of these guys back around the time ish of Jesus, son of God, who told stories of his life and all that jazz. Ok, cool. This book has been translated HOW many times? And it's a book of what...? Stories, right? Ok. Stories. STORIES. You want me to believe that this is the ONLY book that exists which substantiates all of this "proof" of Jesus and God? ...sorry, I don't buy it. You can't SHOW me God, or even something close to it. Church exists where a single man or woman preaches to you "the word of God" as if they are privy to an understanding only given to select few. Ok, cool. God spoke to you and put you on the life path you're on? Congratulations. Do you know what happens to people who claim they're hearing voices that no one else can? They're put on a psych hold in the hospital and deemed "crazy"...but when it's religious in nature, that makes it a whole other ball game. Why? WHY????

   Putting all of the previous paragraph's rant aside, if God is so wonderful and giving...explain cancer, chronic diseases, and early deaths of people who have done nothing but good in their lives. Explain to me why I have to deal with this genetic condition my whole life, limiting the things I'm physically capable of doing, but some dirtball who beats his wife and kids and is a menace to society gets away with a "normal card" and knows nothing of physical struggle and limitations. Doesn't seem wonderful and loving to me. I don't buy it. It makes zero sense to me, and I just can't wrap my head around it.

   I do need to say this though - IF you are religious and have a healthy relationship with God, I'm honestly truly happy for you. I know plenty of people who's lives are in a much better place because of their faith; I also know people who are still alive today because they have their faith and church to hang on to when times are rough. I will NEVER tell someone they're wrong for being religious and I will never push my lack of belief on to someone else; I just ask that no one try to push their God into my life or tell me I'm wrong for not believing - it won't go over well for you, trust me.

  My thoughts and feelings on the religious matter are my own, and I needed to express my annoyance with the lack of understanding/acceptance I often get when I say "no, I'm not religious, but it's cool on my end if you are."

   I've been handed another uncontrollable addition to my life, and it's really putting my ability to maintain stable to the test. Another aspect of my NEED to control, is a NEED to understand. I can handle most anything, so long as I can have at least a minimal understanding of whatever the situation may be. Some people (like my boyfriend) may not need me to understand an aspect of their life or feelings, but I do. It's how I'm wired, it's how I function, and deal with life.

   Everything has an explanation, a reason. I function best when I can talk and/or write things out - as those of you who have held steady through to this point are witness to. Some people are NOT wired this way in the least little bit...I am. I think a lot of it has to do with how I was raised - my parents always told me that I could tell them anything, and so I did. I've learned that most misunderstandings are just mis-communication, or a lack of explanation. I've also learned that with an explanation, I'm able to understand things, wrap my head around them, make a plan to continue forward, and by killing two birds with one stone, have at least a little control in an otherwise uncontrolled situation.

   Sorry for the short novel tonight, folks...but really, I'm not sorry at all ;)

~Somewhere between always and forever, Chelsea Leigh

The "Letting Go"

[This was written a little while ago; I happened to be going through my Google docs, found it and decided, what the hell? So, here is it for your reading pleasure.]

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“Why can't we see that there's/more to love than we'll ever know/Sometimes you're closer when you're/letting go” -Emerson Hart

I constantly struggle with the “letting go” part of relationships. After losing people that meant the world to me, without any say in it whatsoever, actually “choosing” to let someone go is something I will struggle with until the day I die. I just can’t wrap my head around the idea of permanently shutting a door on someone and never ever contacting said person again. It’s sad, it’s heartbreaking, and it’s just not...me.

HE and I have said “good bye” multiple times now. Yet, we always end up having to communicate for business-type reasons (my freezer, the vet, etc. ) and once that line of communication is open, we spend the rest of the day reminiscing and going round and round in circles of “I wish I could’ve”s and “you will always”s...things are said that mean more to the other than the rest of the world could possibly ever understand, and they make me wonder where in the hell everything went so terribly wrong.

We were in love. Like, the kind of love that most people only ever dream about.

Sure, we had a really screwed up beginning; but you know, looking back on it now, he wasn’t the only one that could’ve/should’ve done things differently. Yes, he should’ve been more upfront with the things going on between him and HER, but I also should’ve put my foot down and demanded commitment or nothing at all and stuck to my word. Part of our continual back and forth was more than my fault, because I was so petrified to not have him as part of my life, despite the fact that the pieces of him that I had at that point in time were not the pieces I deserved. I should have demanded the respect I deserved then, and I should have walked away without looking back when it wasn’t given to me. That was my fault. I see that now and I fully accept responsibility for that part.

Then, we made amends. Unfortunately, somewhere along the way, doubt was seeded between us and it was a downhill catastrophe until the very end. I doubted his ability to be faithful and true, and he doubted my ability to be trusted and to stick it out through the hard times. We both wanted to be “right” and we were both stubborn (see - stupid) enough to fight for that right-ness; the unfortunate part is that what we were really doing was destroying every little bit of the other that we had at one point cared so much about; our heads were so inflated with our own “self righteousness” that it wasn’t until we were more broken than a shattered mirror that we realized: somewhere along the way we had lost each other and done things, on both ends, that hurt the other deeply.

Hurt can be demonstrated in monumentally different ways; everyone shows and deals with their pain differently - this key fact is what ended up being the final nail in the coffin of our love story. He was hurting on the inside from my lack of trust in him - which, yes, was more than “deserved”, but he needed me to give more than I was able to - and sought some “feel goods” that undoubtedly were a terrible place to seek them from. At the time, it dulled the pain and seemed okay because it was essentially harmless - no physical action was taken. Sometimes though, in trying to dull our own pains, we destroy the ones we love the most, in ways we never conceived possible.

I was struggling to hold on for the last few months of our relationship. I felt distanced from him, I felt pain and anger; I felt like a roommate just sharing a mutual space with this man who I thought I was going to marry. We failed at communicating well with each other and that fueled our downward spiral. In the end, I chose to leave and say “enough is enough” because neither one of us could take any more of the destructive patterns we were part of. Sometimes, when you love someone, you have to know when to walk away. Granted, I tried everything I possibly could to stay by his side and work through the bad with him; but I also had to take care of myself and make sure I was doing the absolute best for me that I could. In the end, walking away and leaving the pieces behind were what I deemed best not only for me, but for him too. I know he doesn’t understand it; but the way I see it...we were killing each other. We weren’t working. Someone needed to acknowledge that and put a stop to the pain we were causing each other, regardless of what form that pain came in.

It doesn’t take much intuition to know when your partner isn’t happy, isn’t satisfied, isn’t in love with you anymore. Sure, we LOVED each other; but we had lost that spark - you know, the one that makes you smile all day long just thinking about the other person...the one that makes you want to call in “sick” to work so you can spend the day in bed with the other. It just wasn’t there anymore; amidst all of the garbage that was going on, our spark burned out, and we suffered greatly from it.

So how am I supposed to let go of all that “work” and passion, tears and effort, that I put into him and us? Am I really supposed to just stop thinking about him, stop trying to pinpoint where our switch flipped from madly in love with each other, unable to get enough of one another, to survival mode and just trying to trudge on through to any sort of higher ground? My mind doesn’t work like that; I’m a scientist. I solve problems systematically by piecing things together in a very meticulous, chronologic fashion. I don’t just forget about things; I don’t just let things go. Especially people. More especially people I love(d). Even more especially a man, the only man, that I have ever truly thought I was going to spend forever with.

I don’t know how. I know I need to; I know he needs me to. I just...haven’t learned that part yet, and will continue to struggle until I do.

...I miss him, and he’ll never know.

~Somewhere between forever and always, Chelsea Leigh

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.