Sometimes It Feels Like a Three Ring Circus

August 27, 2012 at 1:22 pm (Medical, The Journey Towards Diagnosis, Tuberculosis (Inactive)) (, , , , , , )

I will admit, I’ve been shying away from posting some of the medical stuff I’ve been going through online; it’s kind of a silly reason so I’m not going to explain it. But today was full of such medical fuckery that it would be a disservice to humankind not to share at least parts of it.

In my last medical update, I was scurried off for emergency testing because they saw some sort of cystic lesions around my surgical site. This test was supposed to be an abdominal CT. I went to Johns Hopkins the next day and got that taken care of.

Then I waited. And waited. There were symptoms I was told to look out for, and when they occurred I called my GP. And waited. Finally, I called the office and asked for the practice manager; she promptly informed me that they had not yet received the results of my “STAT” CT, but that she was going to call JH and get them right away. She called back about an hour later and told me they had seen a small nodule, but nothing to be alarmed about, and I should re-test in 3-6 months.

You’d think this would be good news, but I informed her that my symptoms were increasing, and getting pretty uncomfortable, and what was I supposed to do now? She informed me that she is not a doctor, so the best bet would be to come back in and see my GP again. We made an appointment for the following Monday (today).

Please remember in this story, that I’m not living in my former home in Germantown. I’m about an hour and a half away, and most of the journey is on commuter highways. So we had to leave at the crack of dawn (literally) to make our morning appointment. I had a very bad emotional night, so I had only gotten about two hours of sleep. We pulled into the parking lot with only moments to spare and was seen pretty much right away.

I then find out that my appointment is not with the GP I’ve been seeing for years (who at least pretends to have a grip on my whole medical situation) but a new doctor to the practice. I ask if it would be possible to see my GP instead, since I saw him in the office while I was waiting. I was told that no, he was not available and my choices were to see New Doctor now, or make another appointment to see GP. Since we had traveled a while and gotten up early, I went with New Doctor, which is always the bad choice.

She comes in, and she’s this diminutive Indian-looking woman (I don’t know her actual heritage). I have to admit to a little bias here: I try to stay away from doctors with heavy accents, as I have a hard time understanding doctors without them, and it only makes communication more difficult. As she introduces herself, I realize that she has a accent, but I do my best and ask a lot of questions.

I give her the short story of what’s been going on with the emergency surgery in April, and more recently, and she pulls up my file on the computer. However, she can’t seem to locate my CT. Finally, she gets the practice manager to come in, who remembers my story, and finds it immediately. The doctor comments, “But this is a chest CT, not an abdominal one.” My heart sinks, somewhat appropriately from my chest into my abdomen.

Turns out, the GP’s office wrote a script for the wrong CT. (Even though I knew the answer, I specifically asked her, “So was the screw-up that the wrong script was written, or that the techs did the wrong test?” and after hemming and hawing, admits that the screw-up was on them.)

I will admit, I almost lost my shit. I mean, I’ve been having a pretty difficult emotional time, what with the separation and my friend dying and my car not turning over last night, so I came in a little loaded to bear. But this sure felt like a camel-breaking straw. I did my best to swallow my seething frustration and decided to ask about the “nodule” they found.

She says it’s pretty small (6mm), which is probably nothing to worry about, but that I’ll need another chest CT in 3 months. I inform her that I’m seropositive for TB, and that changes her tune. She gives me a referral for a pulmonologist (in that area, rather than near where I’m currently living, which is basically useless to me) and urges me to follow up with him to make sure it’s not TB. Hurray!

Then we get back to the matter at hand. She does a quick exam of my belly, and immediately feels the difference between the rigid parts and the softer parts. She also sees that pushing on certain areas cause me pain. She looks at my surgical scar, and then she tells me to get dressed again.

She informs me that it’s probably a “seratoma” (Dr. Google couldn’t find much by that, but I think she meant seroma, but it we need the CT to be certain. (The funny part is that Dr. Google says that seromas are almost always due to surgical error, but I don’t even have the mental spoons to go there.) It could also be an abscess, which is pretty dangerous, especially in someone like me who gets infections easily. The normal course of action is to go see the surgeon who performed the procedure, and I make it very clear to her that I am basically unwilling to do that unless it’s my last and only option.

She explains that I could ask for a second opinion, and if that second doctor found something noteworthy, they would be the one to correct it, not the original surgeon. I ask her if it’s at all possible to skip the part where I go to Dr. WLS at all, and she comes up with an idea. She calls Dr. WLS office and leaves a voicemail asking if he’d be willing to make a second opinion referral right away. Unfortunately, because nobody answered, I have to wait a few days to find out the end of that tale.

I end the appointment by asking her my stock questions in these sorts of situations: is there anything I can do for the symptoms? Nope. You’re already on heavy painkillers. (Uh huh. Like they will do anything.) All right, I say, so what symptoms do I look for that say “Go to the ER?” She lists a few, but they’re all symptoms I experience pretty much daily. The only one that stood out was “7 out of 10 pain”, to which I replied, “Well, then, I should have gone to the ER last Wednesday, because I was in a fair amount of pain for hours then.” She lists the rest, and again, nothing that would alert me any more than usual.

So here I sit. Now I have to go back into emergency mode, because if these things are seromas, they could be mildly dangerous; if they are abscesses or, y’know, just about anything else, it can be pretty fucking serious. And unless something earthshattering happens, I’m likely to overlook symptoms that might mean GO NOW, because I can’t discern them from everyday stuff. My best bet is to get the tests done right away, and try to keep my head about me, which is a little hard seeing as all the stress I’m under. I also already had two other appointments this week that I can’t reschedule, both in DC, which is an even further commute than my GP. (Did you see the part about my car not working?)

Really and honestly, I’m at wits end. I just don’t have the brain or body spoons to deal with this in any kind of rational manner. All I can do to keep functioning is only deal with what is right in front of me in the exact moment it exists in my field of view, and try very hard not to look at my life in any sort of detail. Life would be, oh, six hundred times less stressful if I could somehow be back in Germantown, so all these doctor visits would be half an hour rather than two, but that doesn’t seem to be a negotiable point right now.

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Reality and Fear: Being Disabled and Separated

August 25, 2012 at 9:56 pm (Death and Dying, Disability, Living With Chronic Illness, Mental Health, Uncategorized) (, , , , , , , , , , , , )

This entry is for Winter, who suggested I write something about this.

Being separated when you’re disabled is scary. I mean, being separated is pretty damn tough on anyone, even if they know or suspect that it isn’t permanent. I don’t mean to make myself look like a special snowflake, but I’m feeling like being separated when you entered into the marriage a fairly-healthy individual, and are leaving it chronically ill, presents its own buffet of new and interesting challenges.

My spouse supported me throughout most of the marriage. I made money from time to time, but in such small amounts that there’d be no way I could ever support myself in the real world without someone to pay the bills. I never took applying for disability seriously, mostly because he seemed pretty happy and willing to provide, and he made enough money that my lack of a steady income didn’t hurt us in any way. In hindsight, this was a giant mistake, and I knew it the whole time, but between feeling ill and being terrified of bureaucracy, I made it anyway.

 And here I am, now living at a friend’s place temporarily, trying to figure out how I’m going to afford the future. There’s no question I’m entitled to spousal support/alimony, but we seem to have very different views on what that looks like. I’ve started the lengthy SSDI process, but I figure I can’t even begin to dream about that money for at least a year if not longer. I’m seriously looking at some ways to make pocket change working from home, but in such a way that doesn’t threaten my chances with SSDI.

And it’s not only the money, although sometimes it feels that way because it’s the biggest monster peering out at me. I lost the one person who walked through my whole downward spiral with me – who knew me when I was relatively healthy, and saw all the incremental steps towards chronic illness. I lost a person who cared for me, in a physical sense, in that he massaged my legs when they hurt, and stayed with me in the hospital when I was sick, and who did kind things for me when I was unable to do them for myself. He made me feel as though love could actually be unconditional, at least for a time, as he tried very hard to make me feel bad about my failing health.

However, I would be lying if I didn’t think that my illness didn’t play into how things fell out. I needed him to see reality for what it was – to accept that there was no mythical day coming when I woke up and felt completely well again. I think he chose to start a new relationship behind my back because he needed an escape from ours – a place where he was the one taken care of, rather than doing the caring. I think he needed a pair of arms that made him feel masculine and virile, and for some reason I had been failing him on that account.

On my side, I was frustrated beyond belief that he couldn’t see how much living in one room day in and day out was affecting my mental health. No amount of me begging and pleading for him to find accessible housing – or even somewhere I could make due – encouraged him enough to take any real action. As recent as a few months ago, he was trying to convince me that if I could just stick it out for one more year, then we could buy a house rather than rent and wouldn’t that be better? And yet he didn’t understand when I told him no, that wouldn’t be better. I did want to own our own home, but it was a million times more important to me to live in a house where I could move around safely and without pain. When I walked out of that house, I knew for certain that he still doesn’t understand that.

 But enough about our shit. I want to talk about the challenges of being on my own, and how life is changing, now that I am separated.

 

  • I am terrified for my financial situation. There’s all the regular expenses that one has to deal with, like rent and food and utilities; on top of all that, things like health insurance and my many prescriptions weigh heavily on my mind. For now, I am still figuring things out, and hopefully with the help of an arbiter we can come to an equitable solution.

  • I am coping with the feeling of abandonment, especially during a time where my health has been more of an issue. I’ve both been in more pain and had less mobility, and also feel closer to an answer than I have in the past. Losing the one person who’s been with me since the beginning (and who has stated that they are no longer interested in hearing about anything medical going on, even emergency level things) has been very difficult for me to swallow.

  • Not being in the place where I have grown to feel most comfortable in, which has been my shelter from the world for a very long time, is challenging. It doesn’t help that where I’m staying now (with very open-hearted hosts, mind you) is much further away from all of my regular doctors. So what was once a ten minute trip to see my GP is now an hour long trek, and that’s if traffic is in our favor.

  • I am irrationally afraid that this will start some sort of chain reaction, where my other lovers will somehow come to the realization that being in a relationship with me is more difficult because I am ill. It also makes me fear that I will meet no one else who will ever want a spousal relationship with me, seeing as I am very damaged goods.

  • Through many difficult conversations, I have come to realize that living alone is not a real option for me. Thankfully, I happen to have someone in my life who just also happens to be looking to relocate, and so I was able to come to an arrangement with them about finding somewhere together. However, there’s a little part of me, the part that feels abandoned, that hates that I can’t just strike out on my own and prove that I can survive without him; and I fear that this new arrangement will only serve to highlight how very much I can’t stand on my own two feet. Many people have theorized that the reason he betrayed my trust is because he assumed I was physically incapable of leaving him, and I’m worried that’s in fact the case.

 

That’s about all I feel comfortable sharing with the blogosphere at the moment. Obviously, I have a lot of feelings about the situation in general, and I don’t want to lose the point here. I want to find a way to plumb the depths of this experience and find a way to express how it relates to being a disabled person, a person with a chronic illness, a person who has lost the partner they thought was going to walk the whole road towards death with them.

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The Return of Dr. WLS?

August 15, 2012 at 4:43 pm (Uncategorized)

We thought we were rid of him, but oh no. Dr. WLS may be making a re-appearance in these tomes.

Lately, I’ve been having these cramping pains in my gut, and I noticed that part of my (rather large) belly has gone much more rigid to the touch. I mentioned to this my GP when I saw him a week ago, and he ordered an ultrasound.

I just got off the phone with my panicked GP’s fellow doctor, because my GP is on vacation; it seems I may have cystic lesions all over my surgical site and that’s a big deal and can I get a CT scan right away please? I’m a little freaked, but I’ve got a great assistant who’s been helping me with all this medical appointment stuff, so I have faith. But then she says the thing I didn’t want to hear:

“…and you should make sure that the results of the CT are sent to your surgeon.”

I will try to quote myself exactly: “I would prefer, that if there were any other surgeon you’re aware of on the whole planet who might be equally if not better qualified to handle my case, that you refer me to them. I had such a terrible, awful experience with Dr. [WLS] that I had to threaten contacting the Maryland Board of Physicians to make a misconduct complaint.”

The GP doctor agreed that maybe we should find another surgeon, but typically once a surgeon does a procedure, all follow up happens through that doctor. I am going to fight tooth and nail to stay out of Dr. WLS office if at all possible, but yeah, cystic lesions? Not fun. I really don’t know if I have a choice of having them removed by Dr. WLS or dying, which I would choose. It was really that bad.

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Inspiring Blogger Award

August 6, 2012 at 8:48 pm (Uncategorized)

My friend Elizabeth, who writes about her spiritual journey in Twilight and Fire, has graciously awarded me with the “Inspiring Blogger Award”.

At first I was very flattered and honored, and then I saw the fine print. It’s more like a blogger meme and less like an award, but what the hey.

The rules, should you choose to follow them, are:
1. You make a post that features the image, and a link back to the blog of the person who awarded you.
2. You find seven other blogs to give the award to, and list links to them in your entry.
3. You drop comments in said blogs so they are aware of this “honor”
4. You then post seven facts about yourself.

Before I dole out the mentions, let me first say that if any of you decide not to further this Internet-age chain letter, I totally understand. Secondly, I tried to choose blogs that I felt dealt with spiritual matters in different ways – relationships with Deity that aren’t God/devotee or God/godspouse; aspects of spirituality that tend not to be discussed, or blogs that inspire me to think more deeply about my own journey. These are not meant to be “Seven of the Coolest People I Know”, so if you’re not here, please don’t be offended.

That all being said, here are my seven inspiring blogs:
Notes of a Barking Shaman.
Wintersong is a fellow disabled shaman who writes not only about spiritual matters, but all sorts of subjects that are near and dear to him. I love that he’s open about his experiences with Tourette’s Syndrome, about his struggles with polyamory, and his relationship with a non-standard-pantheon Deity.

Story of a Godslave
Fala is in a M/s relationship with Cernunnos. I love her blog because godslavery is one of those controversial topics among spirit workers, and because most spirit workers who have God-relationships relate to the Norse, Greek, or Egyptian pantheons. I also love that she writes about the challenges of being in a poly V with a God and a human partner (something I plan on writing about for my other blog soon.)

The House of Vines
Sannion is an insightful, thoughtful, sometimes comedic, sometimes prolific blogger who has a fascinating relationship with Dionysus. Sometimes I need to have a Wikipedia or Encyclopedia Mythica window open while reading his blog because of its use of grecian reconstruction language, but I could use the education anyway. Most spirit workers I know read this blog, but it can’t hurt to give Sannion another shout-out.

The Divine Twins
Another Greco-Roman focused blog, John intertwines his devotion to the Divine Twins and other Greco-Roman Deities with his Yoga practice. He has a much different take on spirituality and how it manifests than most of the people I tend to discuss such things with, and I find reading his blog can feel like a nice sorbet.

Blue Flame Magick
I was turned onto this blog by Michelle Belanger, so blame them. I find the combination of Ceremonial Magick and Buddhism to be intriguing. For those who are interested in magic(k) as a force separate and unique from spirituality, I can’t recommend this blogger enough. Sometimes the entries can be a bit advanced, so if you’re new to all this will-working stuff (and particularly CM) I’d suggest reading a book or two before you dive in. Or maybe you can pick it up as you go along? Anyway, I always either learn something new or remember something I’ve forgotten when I read this blog.

Rock Of Eye
Yeah, yeah, this is the second blog of a lover I’m honoring (Wintersong being the other), but that’s not why I chose Alex’s blog. Rock of Eye has some of the qualities I’ve recognized in other blogs – he has a God relationship that is not devotee/God or God/godspouse (his is a traditional Leather Daddy/boy relationship) and his God comes from a non-standard-pantheon Deity. What I really find inspiring about what he writes is that he is transparent about the fact that he’s still figuring this all out as he goes along; that he still has a healthy amount of doubt; that he makes mistakes and his signal clarity isn’t perfect; but at the end of the day he maintains his faith and does his best to do what Daddy tells him to.

Facing the Fires Within
Eric’s blog is still getting off the ground, but I truly believe it is one to watch out for. He has dedicated himself as a “Rage Priest”, and facilitates private and public rituals that allow people to get in touch with, and honor, their reserves of anger. So many Pagans treat anger as a “negative” emotion, something to suppress and eliminate, rather than express and use. I also know Eric personally, and I love that he’s still making the mental leap from philosopher to mystic.


I figured we needed a silly image to break up this post.

Seven Facts About Myself:

(Some of these were specifically requested from friends on Facebook, so don’t blame me.)

I was born in San Angelo, TX, but I have no memories of it and have never been there since. I recently met someone who grew up there, and quizzed them about what life is like.

In fourth grade, I convinced several of my classmates that I was a leprechaun. I had just moved to a new school and was terrified the kids wouldn’t like me. So I told them I was from Ireland (easy since I had long red hair and pale, freckled skin) and that I couldn’t grow much larger than I already was (I was 4’11” at the time) due to my leprechaun blood. That was mostly shot to shit when I hit a growth spurt in sixth grade, but by then the kids had figured out it wasn’t true.

I once thought I would become a professional opera singer. I studied and performed at a professional level from 1991 through 1996 or so. I’ve done a handful of musicals since then, but when I became a shaman my desire to perform like that dried up. Every so often, like watching Glee or Smash, I get a tickle to at least take voice lessons again. I’ve also sung Georgian folk music, and every so often listen to it; I have no Georgian roots, but I got roped into it by my friend Glenn and it’s musically challenging (a capella, very close and non-traditional harmonies, and a somewhat difficult language to sing in for Americans).

My spiritual journey in a nutshell**: I grew up Christian, specifically United Methodist, and I took it very seriously. I heard the call to ministry while I was a freshman in high school, and was preparing to go to seminary when I left college due to being outed as a lesbian. I met a woman to introduced me to Dianic Wicca, a very woman-centric and separatist sect of Paganism, but I wanted more and varied experience. I joined an Alexandrian Wiccan coven, and stayed there for a while, but my beliefs and experiences became more free form and eclectic. Eventually, I started my own coven, but that was a disaster. About that time, I had my first interaction with Loki. I spent a few years privately trying to figure out what I really believed while studying various forms of magic. Finally, I accepted Loki’s offer to be reborn, and became a Northern Tradition Shaman of the madness variety.

I have a tattoo dedicated to the comic-book Deity Delirium from Neil Gaiman’s The Endless. It is fish-themed, as she once said, “I met a lady once who had an imaginary fish.” It is large, and encompasses half of my back and a part of my shoulder/arm. There are fish-shaped tribal designs, colored like her speech bubbles were in the novels; there are various images of butterflies and fish that are also puns – like an Angel fish with a halo, a Hammerhead shark that could do damage to a nail, and a Monarch butterfly with a crown. There are also words – some relate to Delirium and her origins (like “Dream”), and others were taken from various works of creative writing that my friends read while I was being tattooed. It took four sessions, and a culmulative forty hours of work.

At the pagan festival I have attended for the last nine years, I am in charge of the “short bus”, a six-seater golf cart that transports people around the site. I instituted the service on my own, and actually paid for the rental the first year to prove the concept. It has become a fixture of the event, and people continually tell me that without it, they would not be able to attend. I am extremely picky about who I “hire” as staff, because the job is more complex than it seems. Not only do you have to be very customer-oriented, but you also have to have a general working knowledge of the event and its policies; since we’re constantly roaming the grounds, we are the most likely to see medical emergencies as they happen or rules infractions. You also have to be cool headed in an emergency, because the cart is frequently used to transport staff to strategic locations. You also serve as liaison between the attendees and the coordination staff, since we’re the most visible and findable people with radios.

Someone asked, “When did you first start to believe in magic?” When I was Christian, I trusted quite a bit in the power of prayer – not only in the concept that you can ask God for things and He will deliver, but in the more new-agey idea that just focusing on an issue with reverent energy can affect its outcome. When I converted to Paganism, and learned more about will-working, the concept translated pretty much the same, just with different window-dressing. I’ve seen some miraculous manifestations of will, and have been blessed with some pretty specific “coincidental” experiences that felt very much like a tangible result of reverent focus. More than magic, I believe in the power and ability of energy as a real force in this world, and believe that force can be manipulated to increase probabilities.

**I get this question all the time when I ask people want they want to know about me. I feel like I’ve told it here and in Sex, Gods, and Rock Stars, but it was requested on Facebook yet again, so I apologize if it’s the eightieth time you’ve heard it.

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Need vs Want

August 3, 2012 at 9:36 pm (Living With Chronic Illness, Mental Health) (, , , , , , , , , , , , , )

It’s been a week since I made the decision that my marriage was functionally over. There’s been a whirlwind of questions since then; from him, my friends, and most of all from me. He is trying to convince me that he wants to fix things, that he is really committed to this relationship. I’ve also been looking into temporary options; it’s been hard sharing living space with him, as it seems any time we sit down to talk it turns into emotionally wrenching, snot nosed emotional venting. I can’t keep that up on a daily basis and maintain my sanity.

One of the big questions is about where I am going to live, both in the short and long term. I told him I would stay here for 30 days, but that’s quickly turning longer. I’m scheduled for surgery on Sept 19 and I have nowhere else to coalesce. I also don’t want to jump to any long-distance options because that means rebooting all my health care – finding new doctors, starting over, getting new scripts. This is a bad time for that, what with the neurologist actually making progress. So staying here is unfortunately probably my best option.

What makes it hardest for me is that I feel that one of the reasons he felt he could do what he did is because in his head, I can’t leave. My partners are very concerned about me living alone, even if the option of a PCA were to manifest. There would still be no one there to help me should I need to go to the hospital in the middle of the night, or if I need help getting around my house, or if I fall. But that concern gives him an undeniable advantage.

Do I need him? Has my health progressed to a point where being single would be detrimental to my health? There’s definitely a part of me that feels if I really am facing the downslope of my life, the better choice might be to swallow his indiscretion in exchange for companionship as I walk this road. But that’s a want, not a need. What are my needs, in term of day-to-day living?

As of now, I spend most days alone. He goes to work, and I hang around working on the computer or watching streaming video. I make phone calls and write. I rarely go out and do things, as most of my friends also have day jobs. I go to doctor’s appointments, and it’s the exception rather than the rule that he takes time off to go with me. (He sometimes does so I can have a ride, and once in a while if the appointment carries weight, he’ll go.)

But I admit that I also put some stuff off until he comes home, so I can have his assistance. I usually need help to change the sheets on my bed, to retrieve items from upstairs, and go to the store. I like having one person who has walked the whole experience with me, that I can discuss new developments with, so together we can process and brainstorm and make decisions. Sometimes, he makes sure I eat (between the nausea and the pain, sometimes I won’t eat without coaxing). He massages my legs when they are painful.

Once everything was out in the open, I told myself that I had to prove to him that I didn’t need him just because I am disabled. I had someone else go out and get enough food that I could feed myself with the equipment I have in my room. I had them bring down clothes from upstairs and do a load of laundry. I made sure my meds were up to date. I got rides to all of my upcoming medical appointments. I wanted a semblance of independance, a feeling as though when this ends, I will be okay.

It’s been interesting. He comes home from work and we share an awkward conversation because he’s used to me asking him to do stuff, to bring home dinner, to talk about my doctor’s appointments, but instead I tell him I’m okay and leave it at that. He keeps reminding me that if there is anything he can do for me, he’s willing. When I finally asked him to run me a small favor, he took it very seriously – in a fucked up way, it felt like giving an addict a hit.

I know he has serious White Knight syndrome: he’s very attracted to people who have an obvious need in their lives. Almost all the people he’s dated (including *that* one) have been people who suffer from challenges he’s been able to help with in some way. Whether they have serious health issues, or are in neglectful relationships, or just need a confidante to talk about their lives with, it makes him feel valued and cherished to be that person for them. I see it as clear as day.

What I’m afraid of is that is all that’s left for us. That the reason he chose to deceive, rather than leave, me, is because of some odd sense of obligation. No one wants to be someone else’s obligation, least of all me. I keep telling him it’s about choice: I want him to choose to be here because it’s the best option in his mind. I want him to desire me, to be the first person he wants to share his thoughts and dreams with. I want him to want me for all the unique things that make me awesome; I do not want him to want things to work out because I’m disabled and need someone to take care of me.

I want a husband, not a PCA.

For now, I’m moving forward. I had a sleep study last night in hopes that a better CPAP setting (or a BiPAP, for that matter) may help relieve some of the brain-fog I have. Also, good night’s sleep helps my pain tremendously, and in the past few months my sleep quality has decreased significantly. And my neurologist is also a sleep specialist, and this was one of those things he insisted I do before we move forward. I have several appointments next week, including meeting with the GP about getting new STI tests. (Not something I’m particularly happy about, but in light of what’s happened, and it’s about time anyway…) I continue to think deeply about want vs. need, and what I need moving forward; both in terms of taking care of myself physically due to the challenges I have, as well as emotionally and romantically.

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