Assaulted by Gratitude

November 29, 2012 at 2:44 am (Living, Spiritual) (, , , , , , , , , )

I tend to be a pretty misanthropic person. I’m incredibly jaded when it comes to the sweetness of humanity, and in my work as a shaman and an ordeal worker, I tend to see the parts of people that don’t really emphasize their, uh, better qualities. I’ve also been through a lot of experiences, especially recently, that could easily make me give up on other humans and go live as a crazy cat gentleman somewhere in the midwest. I’ve been attacked, both physically and emotionally, just for daring to be true to myself and to express that to the world. I’ve had places I thought to be safe and accepting, turn out to be viper’s dens of backbiting and lack of consideration for those who are hurt or outcast by their thoughts and actions.

In short, life has given me every reason to sit on my front lawn and shake my cane at the youngin’s.

And yet.

Every day this week, there have been deliveries from Amazon. Today there were five packages in a neat little stack on my porch. I get updates from Rave about how generous my friends have been, individually and communally, in response to my request for aid. People have shown such kindness and willingness to be of assistance in ways I would never have dreamed. I think when Rave saw the initial numbers on WePay, she almost passed out.

I was struck with this feeling. It feels foreign to me, this odd sense of a weight being lifted off my chest, of feeling like things are going to be okay, even if just for a minute or two. That if I was every stranded at Tijuana at 3am, I could find someone who would pick my broken ass up and take me home. I was literally assaulted by gratitude.

I almost feel like there’s really no way to express this immense sense of connection, of thankfulness, of reassurance; if you’ve ever been through a divorce, you know that there is this very normal period of feeling like not only are you no longer loved by the person you thought loved you unconditionally, but as your friends all take a step back and try to figure out their own responses to what happened, you can feel kinda abandoned. I know this feeling well, as unfortunately this is the third time I’ve been in such a situation. (I’ve only been married twice, but in between I had a long term relationship that might as well been spousal, that also ended abruptly by me being dumped.)

It was hard for a while there. I honestly didn’t know who I could trust. I reached out to someone, just to talk, only to get a whip-fast response that they were not interested in hearing negative things about my spouse or his new poly family, and if that’s what I wanted I could take it elsewhere. I don’t know how to explain to them, or anyone else, that it’s basically impossible for me to discuss the separation without speaking my truth, and obviously that truth includes negative things about my spouse, because if there was nothing negative to say, the divorce would be a somewhat random event, no?

And so I circled the wagons. I only really spoke to those closest to me, the ones I knew had my back no matter what. I didn’t reach out much beyond this safe space. It didn’t help that the STBX was repeatedly telling me that we had shared friends who were telling him what an awful, terrible person I was and how wonderful it was he was rid of me. I had no idea who these “friends” were, so I couldn’t tempt fate by accidentally taking one of them into my trust.

I am also not one who easily asks for help. Ask Rave. I can be downright annoying, trying for ten minutes to do something she can do in less than one, but goddammit I want to do it for myself. Sometimes that’s important, and absolutely the right thing, but sometimes it can be almost ridiculous. Watch me try to propel my current wheelchair – it’s a great visual example – the one I have is not meant to be self-propelled at all. And yet, I will frequently bat her away and try to do it myself, only getting a few feet before I give in and let her push. I know this, and yet I keep doing it over and over again.

I didn’t want to ask. I was terrified of checking the website and seeing nothing. Proof that my deepest fears were true, that I didn’t have anyone I could count on beyond my tightest circle of family-of-choice. But I got to the place where I didn’t have a choice – there was just no way we could do the things we needed to do without help.

And the help, she poured in. Not only were we shocked by how much, but from whom. People I haven’t seen in person for years, sending gifts of love. People who have very little of their own, giving a portion of what they do have. Volunteers coming out of the woodwork to take on tasks or projects, like moving my piano so I don’t have to hire professionals, or finding a masseuse to donate a massage to me because it would help. People I don’t think I’ve ever had a real, significant, out-of-LARP-character conversation with. People I don’t even know their real names. People who have already done so much. People I haven’t ever met. People’s mothers and sisters and friends. People I’ve only corresponded with on the Internet. People who read my blog. People who heard about the situation from someone else and decided they wanted to help. People we don’t even know who, because the gifts came with no indication of their sender.

And it’s timely. I am holding onto this surge of love, of support, of caring, as I prepare for my surgery. I know not everyone can be there in person, but I consider every single person who has come to our aid to be there in spirit, one way or the other. Without you, I wouldn’t be able to march forward, face what the future holds.

There is still time. There is, unfortunately, still need. Although we have seen an outpouring that we never expected, we still have needs that have not been met. We need to locate a place to live, and have enough money to pay first/last/security. We still need lots of wound care supplies for when I come home. We still need a little more to help out our friends who want to come visit, and need gas money or airfare in order to do so. We, by no means, are asking for more than you can give, but maybe you can send out a message to your friends? A tweet, a status update, an email to those you know with an open heart?

But for now, I am grateful. More grateful than I thought possible. I’m sitting here wearing a shirt, pants, underwear that were all gifts. I smell of lotion that was a gift. I’m drinking tea that was a gift. I’m about to lay down and go to sleep with a pillow that was a gift. I am blessed. Everything I use or touch or see that came in because of our clarion call, is a reminder of that blessing.

And it drives me to get well as best I can, so I can get back into my community and do more good works. Help more people with their spiritual woes. Write more meaningful blog posts. Do more volunteer work. Do more to make my Gods happy, to fulfill my Purpose-with-a-big-P, to bring happiness and peace to everyone I touch, one way or the other.

I am blessed.

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Things are Looking UP!

November 26, 2012 at 9:38 pm (Chronic Pain, Disability, Hospitalizations, Living, Living With Chronic Illness, Medical, Mental Health, Spiritual, The Journey Towards Diagnosis, The Panniculectomy, Tuberculosis (Inactive)) (, , , , , , , , , , , , , , , , , , , , , )

I get comments sometimes that this blog has turned into one gripe after another about how negative my life is; a “bitch fest”, “too much focus on the negative, and not enough positive thinking”, etc. So I thought since I’m having a pretty red-letter day that I would take a moment to let all of you know some of the positive things that are going on in my life.

First and foremost, when I was seen for my post-hospital stay follow up, my surgery team jointly decided that there was no need for me to be seen again until my pre-surgery appointment on December 14th. This is great news, and basically turned 4 appointments into one. We decided to leave the drain in until surgery, both to reduce the number of appointments and also to keep the abscess from cultivating more ick before it’s surgically excised.

We’ve found a great service that we’re going to be using to control all the informational traffic around the surgery and aftermath; rather than litter social media and having multiple phone trees, we’re using Wiggio as our sole information stream. We chose Wiggio because it has a ton of features that will be useful for us, including the ability to send mass text messages, have a shared calendar to schedule visits, project folders to organize different things that I or Rave will need help with, and lots more. The way the Wiggio works, you need to send us an email at delandrave@gmail.com to request an invite; we did this so we can know everyone who is on the group and make sure people who are on there are more than just passively interested in what’s going on. There will be some posts made to social media, so if all you want to know is if I’m out of surgery or ICU, there will likely be posts to that effect eventually. On the other hand, if you want to be actively involved in helping Rave with things during my hospital stay, or want up-to-the-minute information on my situation, please feel free to ask us for an invite. If you’re not someone we already know, you may want to include some information as to how you know me and how you expect to be helpful, so we have some idea. Like I said, we want to make sure everyone who is on the Wiggio is someone we trust to be an active partner in what is happening.

In that vein, the house that we’ve been affectionately referring to as “The Squat” is on the market, and the arrangement was that we could stay here until it sells. Well, an offer has been made, and if the bank accepts it, we have 45 days to vacate the premises. But fortunately, we found a perfect place for us right in southeastern Frederick; Rave went to tour the house today and found it to be old and a little beat up, but otherwise totally awesome. It’s on a 41 acre horse farm, a four bedroom house with a master bedroom/kitchen/full bath all on the first floor. I love that we’ll have space for two guest rooms, which will double as a sewing room for Rave and an altar room for me. We should be getting an application tomorrow; we tried to make a deposit because the landlady said she’s had a LOT of interest, but she wouldn’t accept it. So for now, we just ask that you keep your everythings crossed that the application goes through with flying colors and we can solidify a place to live. It would mean a large burden off of both of our shoulders, so we can focus on the surgery without having to split that focus with the arduous task for finding a place to live.

And what’s made that all workable has been the incredibly wonderful response to our request for help. We’ve received so many packages from my Amazon wish list, and a blessed amount of financial assistance. We have enough to make a good deposit on the house, should we pass the application. However, we can always use more help, so if you haven’t had a chance to check it out, please take a look at my entry detailing the many ways you can be of assistance to us.

That’s not all! Rave went down to my old house to pick up some belongings and happened to find a piece of mail I have been waiting on for four months! Yes, that’s right, my name change has been approved, no court date needed! I am so incredibly pleased that my name is finally my own in all senses; I have been told by my Gods that I am *never* to change it again, no matter what. I finally have a name I chose for myself, one that represents who I am and how I move in the world. I took my long-time nickname and nom de plume, “Del”, as my first name. I kept the middle name my parents gave me, because it’s pretty awesome and also as a tie to my familial line, so it stays “Astra”. Finally, I was able to shed myself of my STBX’s last name (which I wasn’t thrilled about taking in the first place, but did it as a token of my love and devotion to him) and take my Clan’s name, something I’ve been wanting to do for quite some time but my STBX was totally against. So my full legal name, which I am unafraid to post on the Internet, is Del Astra Tashlin.

Another great thing is that I am now on a course of drugs to finally treat my latent tuberculosis, and I haven’t had any withdrawal or other terrible side effects. I, by no means, am trying to say it’s been a walk in the park, especially combined with all the antibiotics and other meds I’m on, but it’s nothing like when I tried the Rifampin, twice, so I am so pleased that someday, I will be TB free.

So in all, things have been looking up here at The Squat. We’ve finally hit a streak of good news, tons of support from our friends and family, and are preparing for a surgery that, although it won’t heal *all* the problems I face, will significantly reduce my suffering (especially in terms of infections and repeated hernia surgeries) for some time. There is hope that while I’m in the hospital, they will be able to run a battery of tests to help discover why my immune system seems to be so suppressed/why I seem to get every infection that walks by, as well as possibly transfer my pain management to an office closer to where I live now (the one I currently see is now over three hours away!), and also get more Johns Hopkins doctors interested in my case so I can get some integrated care – where the ID doc knows what tests the neurologist ran, and the pain management doctor can talk to my surgeon about how to administer meds so my chronic *and* acute pain can be treated simultaneously, and the like. This is all very exciting, and a really good reason to live, which is the real thing I’ve been looking for these past four months.

Thank you to all the Gods and Spirits who have been with me patiently while I thrashed through my suffering! May they stay beside me through the trials ahead, but also be able to celebrate with me all the good things that have come into my life! Thank you to all the people who have done the same!

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A New Beginning: Asking For Help

November 17, 2012 at 1:33 am (Hospitalizations, Living, The Panniculectomy) (, , , , , )

(This is crossposted from Sex, Gods, and Rock Stars.)

Friends, family (of blood and of choice), colleagues and clients, fans and stalkers:

Rave and I find ourselves in the position of the Tarot’s Fool; on the edge of a cliff about to start out on a new chapter of life’s adventure. In August, I separated from my spouse and ended our ten year relationship due mostly to his repeated infidelity. Rave found herself struggling with the longest stretch of unemployment since she entered the workforce. Together, we happened to be in a place where strengthening our four-year relationship and uniting forces made it easier to face the dark uncertainties ahead.

We have been blessed with the assistance of friends and family as we struggled to get on our feet. At first, our friends Spark and Fuego gave me a place to stay so I could move out of my spouse’s house immediately, and were supportive when my health situation intensified, requiring Rave to spend more and more time with me. Rave and I decided to move forward together, and now we live in our friend Shane’s house temporarily while it is on the market.

Rave has secured a job in Frederick that while not optimal, covers her expenses. I’ve reached a spousal support agreement that keeps me from being hungry and homeless, but doesn’t leave a lot of wiggle room. It’s worth noting that neither of us were prepared for this radical shift in our lives, so we’re making due with what little we have and the kindness of friends.

This has all been complicated by a quick deterioration in my health. In August, a CT scan showed two fairly large, infected abscesses in my abdomen along with a lot of infected and necrotic tissue. I have had two stays in Johns Hopkins Hospital to treat the emergent effects of this, including having to have one of the abscesses drained twice after the empty void left from the first effort refilled with pus. The infection is wreaking havoc on my entire body, and if left untreated would eventually kill me. This is not an exaggeration.

So we’re left in a place where we’re both juggling more balls than we can handle. We have to locate a more permanent place to live that meets our fairly specific needs, find the funds to afford a deposit (first/last/security is pretty standard), move all of our belongings from our old abodes into storage (which our friend Karl has been gracious to provide) or into our temporary home. At the same time, my doctor’s appointments have doubled (all the ones I struggled with before with the addition of the ones related to the current infectious issues). I have to undergo a risky surgery where I will be an inpatient for a month or longer, and Rave has been my medical proxy and “assistant” in helping to schedule appointments, help me find transportation, filling my never-ending prescription needs, and in general taking over as my primary caregiver. Don’t even get us started on all the mental and emotional roller coasters we’ve been dealing with, on top of our everyday struggles.

We have plans to move out by January or February, but things have proven a little difficult.

I am now on a fixed income, and Rave has a job but it just barely pays the bills. We recognize that we are not destitute, but we do have some looming financial challenges ahead, and we are asking for your help.

This fundraiser is for two things:

1. I am having a potentially dangerous surgery at the end of December. I have lovers and friends who deeply want to be present before, during, and after my surgery. Most of them are also living hand-to-mouth, which makes finding money for travel and lodging difficult. I don’t want anyone who feels a need to be physically present and supportive of me to feel like money is an obstacle in their quest. I will also have some expenses related to the surgery that I will have to struggle to fulfill. My health insurance, although pretty damn good, does not cover things like wound care supplies and other necessities in order to achieve the best possible outcome.

In that vein, we would like to raise a little bit of money so those who wish to see me or be there for me during this time can do so without having to go broke in the process. In specific, we’d like to be able to make a contribution towards their travel expenses (gas, plane tickets, etc) as well as have a hotel room near Johns Hopkins for the day of, and a few days after, my surgery, so they can have a real bed to sleep in but be close by should their presence be needed.

Also, as I mentioned, I may need a little extra money to cover some expenses that insurance won’t. Parking at JH is expensive, and Rave would appreciate some help so she doesn’t have to weigh how much it costs with her desire or need to be there for me as often as she’d like. Also, being in the hospital can be trying/depressing, and although I’ll have wifi, I may want to purchase some books for my Nook or get a little outside food when I’m allowed. Finally, I will have follow up appointments for months afterward, and I pay someone to drive me to and from these appointments, so having a little cushion to cover some of that expense will make it easier for me to get the care I need.

2.In order to move in Jan/Feb, Rave and I will need, at the very least, first and last month’s rent, with the possible addition of security deposit. We don’t have enough time or resources to save all of that up before the move is necessary. Although we’ve been told by our current host that we can stay as long as we like until the house sells, Rave and I want to reach a place of independence where we aren’t relying on someone else’s good will for something as fundamental as shelter. We have already started looking, and we know we can likely find somewhere that both fits our unique needs (my disabilities limit what places are suitable) within our means to pay rent. It’s just having that lump sum up front that we are struggling with.

That all being said, we are asking for your goodwill donations in order to assist us in these goals. People who know me, know that it is very hard for me to admit when I have a financial need; I have been blessed for most of my adult life to fend for myself, and I do not have the parental safety net that many of my peers do. (My mother is on SSDI and lives with my sister, so moving home and/or borrowing money from her is not an option.) I am always wary when someone on the Internet asks for financial assistance, and with that in mind, I can provide you with references to people who know me very well and will attest that the money will absolutely go to these things. If by any wild chance we end up with overage, it will be used to replace many of the things both Rave and I lost in our subsequent separations (she moved out of the place she shared with her ex as well, and with separation is the loss of shared property that the other party wants/needs more) or to cover other expenses related to the move, such as hiring piano movers to move my piano.

I have had offers from friends who, upon hearing of my husband’s indiscretion, to help in an financial way. I am officially cashing in (pun intended) on those offers now, but here’s what I really hope:

If I have given you a divination, facilitated a ritual, had a conversation, taught a class, or maybe just wrote a blog post that in some way benefited your life in some fashion, this is your chance to show me in a tangible way that you appreciate all the things I do for the community, often without any financial benefit on my behalf.

If you enjoy reading my blogs and want me to continue writing quality content that is both educational and insightful, this is my “tip jar”. I know I have many subscribers and readers, because I check the site stats often, and even if most of you could spare $10, it would add up to a healthy sum.

If you have experienced a partner who has cheated on you, or in some other way violated your trust, and you are now in a position to help someone else rebuild from that experience, I can promise you this will go to a good cause. You can be of assistance to someone else who has been forced to rebuild their life due to someone else’s choices.

If you have felt like you wanted to do something to help me or cheer me up due to my medical situation, this is obviously the best time to do so.

If you have ever found respite with me; been the recipient of crash space, emergency funds, food and/or clothing, or just a supportive friend who was there for you in your time of need, consider this a request so I can continue to do those things for people in the future.

How To Donate:

Our preferred method of donation is through WePay, because I am not a fan of some of Paypal’s practices.
You can donate directly at our WePay page here: Del and Rave’s New Beginning

However, if donating via Paypal is easier for you, you can send us a “gift” (please be sure to label it a “gift” and not a “donation”, as Paypal requires you to be a 501c3 in order to receive donations though their site) to delandrave@gmail.com.

I have also begun an Amazon wishlist that has many items that I think I will need post-surgery, as well as some items that would make life a lot easier (like a shower chair, or a new winter hoodie). I also added a few comfort items, like the shower cream Rave and I like. I figure this gives people the option of providing items directly instead of making a financial donation. The wishlist can be found here:
Del’s Post Surgery Wish List .

If for whatever reason, a financial donation is beyond your means, there are other ways you may be able to help:

1.You may come visit me while I’m in Johns Hopkins. I will be there for at least three weeks, if not a month, and that’s an eternity in “hospital time”. Even if we aren’t super close, just having someone to talk to and hear what’s happening in the outside world is useful to me.

2.We will need strong backs and large vehicles to help us move from our “squat” into our new apartment once we locate it. Rave will be doing this on her own, as I will be in the hospital or too weak to be of assistance. We have a fair amount of stuff, some of it in Hagerstown and some of it in Brunswick. We would also accept help in setting up the house and making sure we have all the necessities, from toilet paper to frying pans.

3.If you live in or very near Baltimore, you can offer crash space to people who are coming in from out of town to visit, or lend them a car so they can fly in and then drive to and from the hospital on their own.

4.Rave will be very stressed while I am in the hospital; it is difficult to work full time and then spend every single evening in the hospital/staying overnight. Offering to take her out to dinner, or do something else fun and relaxing while another person visits me, would go a long way to helping her stay sane.

5.We will be selling items, including furniture, that the person who owns the house we live in left behind and does not want. You can help spread the word, and help us find people who need the things we have to sell. In that vein, if you are a whiz at Ebay or Craiglist, we could use your help in figuring out how to make a little money from this stuff.

6.We have very specific needs in a place to live: We need to find a place within a 5-30 minute driving distance of Frederick, MD. We would highly prefer two (or more) bedrooms, but can compromise if the place has one bedroom and a den/living room. It either needs to be all on one floor, or at least have a master bedroom, full bath, and preferably also a kitchen on the same floor. We really don’t want to live in a complex or share walls with neighbors if we can help it; we prefer places that have character, and are willing to live in a “fixer upper” as long as we don’t have to do the “fixing”. Our dream place would be handicap accessible (a wheelchair ramp to the door, wide doorways without lips or jams, and grab bars in the bathroom), have a yard or other outdoor space to hang out in, allow dogs (we very much want to get one), and would be on the first floor or have a very small amount of stairs involved. It would be lovely if it had its own washer/dryer and some sort of storage space (attic, basement, spare room, etc).

The catch is, we most we could pay would be $1000 a month, and even that would be at the very tippy top of our limit, so we’d want it to be as close to perfect as it can be and include most, if not all, utilities. We’d be more comfortable at somewhere around $800.

7.When I come home from the hospital in mid to late January, having Del safe (mostly no carbs, no soy, no legumes, high on animal protein and vegetables) microwaveable or shelf-safe food will make my transition much easier. I will still be on large amounts of bedrest when I am released, and may be laid up for another month or longer.

8.If you wanted to help keep my expenses down, you can volunteer to take me to doctor’s appointments. They are always during workday hours, but I can be somewhat flexible on what day of the week they fall on.

Please spread the word about this fundraiser; I know there are many people whose lives Rave or I have touched over the years, as well as online friends who find our journey compelling. We also know the power of internet philanthropists, who can spare $5 for a stranger in need.

We will be keeping an accounting on how all the money is spent, and that accounting will be made available upon request. We want to make sure that you feel safe that your money is going for the things we have outlined, and not just an attempt to use our situation to splurge on items we don’t really need. As I stated before, Rave has opened a separate bank account for this so the money will be delineated for these needs and not accidentally spent on frivolous items.

If you have any questions, offers of help, or in any way need to contact us, you can email us at delandrave@gmail.com.

Thank you, from the bottom of not only my heart, but Rave’s heart as well, and my other lovers, family, and friends who will be able to be present for me during my trial due to your generosity. I also do hereby promise to pay this forward; when I have the financial means to assist someone you know, all you need to do is let me know about the opportunity and I will be happy to send or do what I can.

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Looking Towards Surgery: The Plan

November 15, 2012 at 7:43 pm (Hospitalizations, Medical, Mental Health, The Journey Towards Diagnosis, The Panniculectomy, Tuberculosis (Inactive)) (, , , , , , , , , , , , )

I am happily writing this post from the comfort of my bedroom at The Squat. I was discharged today after my “two to three” day stay that was actually six. But a lot of good was done in those six days; the abscess was repunctured and all of the infected fluids that had collected inside was drained out and cultured. I found out definitely what kind of infection (or at least one of them) resides in my pannus and was given a strong antibiotic that will help clear up some of the immediate threat. I was able to start my course of Isoniazid while being observed in a medical setting to make sure I didn’t have any negative reactions to it; and I got a much better understanding of what I face when I go back in the end of December for my panniculectomy.

The biggest goal between now and then is to keep the infection(s) as low as possible. It’s unlikely I will be completely infection-free before the surgery; after all, that’s a big reason for the surgery, to remove not only the pockets of abscess, but all of the infected and necrotic tissue that has built up in my belly since the hernia repair in April (and who knows, maybe before). I have been chastised to take the bedrest “suggestion” much more seriously, so other than some low-key social gatherings (like going over to a friend’s house for Thanksgiving) I will be spending the majority of my time in my bedroom being a big ol’ slacker.

I not only have to go to a few follow-up appointments to make sure the infections are doing as well as they can, but I have to see a pulminologist to assess my strengths and weaknesses where a long surgery is concerned. I want to get my daily life in a place where I can convalesce for a month or more at Johns Hopkins without a lot of worries back home. This includes doing what I can to help Rave get the search for a more permanent place to live into full gear, getting my meager belongings that are here ready to be moved in my absence, and making sure that I have little to nothing to stress about so I can fully focus on getting better.

In an odd way, I feel that this unplanned trip to JH turned out to be a very good thing. I was feeling a bit at loose ends about the upcoming surgery since there was really nothing planned until my pre-op appointment with the plastic surgeon on Dec 14th. It gave my doctors a chance to think and experiment with pain management post operatively that really takes my (somewhat high) tolerance for opiates into consideration. (A regimen that actually brought the pain related to all of this down from a 7 to a 4 on a regular basis, that did not require IV access was put together the day before I was discharged. Because it increased some of the meds I already take by quite a bit, the chance to “try it out” before I was home and on my own not only to make sure it addressed my pain, but was something that didn’t leave me a drooling nonfunctional mess was appreciated.)

It also highlighted some weaknesses I need to address before the surgery. Rave busted her ass, like she always does, to be as available to me as she possibly could, but at the cost of enough repairative sleep to allow her to be fully functional at work without having to rely on her wakefulness drugs or caffeine, which in turn gives her migraines. When I go in for the long haul, it will be better for both of us if we can figure out a schedule that allows her to feel useful and be available to me when I need her, but also gives her “nights off” so she can get the sleep she needs. This means we may need to find other people who have evening/nighttime availability to spend time with me, but also make sure I have occasional daytime visitors who can help with some of the needs/tasks that I can’t ask a nurse or tech to do.

I think it’s important for people to understand that although visitors who come purely to socialize are nice and appreciated, it’s not the only reason I may want friends and family around. For instance, I had a really difficult time this visit getting the nutritional team to understand and meet my basic food needs, so having people bring me supplemental food and drinks can assure that I’m not going without. I may also want someone I feel completely comfortable with assisting me with things like hygiene, rather than having to ask a stranger, especially since the inpatient experience forcibly strips you of a fair amount of privacy and autonomy already. Being able to run down the day’s meetings with various doctors and other medical professionals with someone else not only helps solidify my own recollection – which I have issues with due to some of the neuro issues – but brings a fresh perspective and alternate points of view that may hold important answers for difficult situations. Sometimes, having someone else present while meeting with a doctor can help remind me to ask questions I may otherwise forget, or bring up subjects that those who assist me might benefit from knowing. Even something as simple as watching as a nurse dresses a wound in a particular way can then lead to having someone who can teach those who can’t be present when it’s demonstrated (but who will eventually be in charge of doing the dressing).

And it’s worth mentioning that this trip was incredibly emotional for me. Admittedly, part of the problem was that I got my period two weeks early (practically unheard of for me) so I’m sure my hormones were all messed up trying to deal with that. But I had two days where my anxiety was bad enough that the nurses were suggesting I take some of my anti-anxiety medication, and not having someone who could serve as a touchstone to reality exacerbated issues. I am, by no means, trying to guilt people about not being able to visit, especially since this trip was unplanned and happened to fall almost entirely during a work week, but more to share something Rave and I learned about the power of visitors.

One of my fears about how the planning for the upcoming surgery is falling out is that I have plenty of friends and lovers who are coming from out of town to be there directly before and after the procedure, but most of them will have to return home once I am stable. That leaves me with several weeks where I will still be stuck there, so it might behoove me to reach out to friends and family and set up some planned visits during that time. It can be anything from a local friend making the commitment to come “every Wednesday afternoon”, to other long-distance friends making a trip down to spend the weekend. If you’d like to volunteer for this important service, please email me at awesome.del@gmail dot com so I can start putting together a calendar. If you aren’t local and want to come for a visit, we have lots of resources not only for crash space, but also for people who can lend you a car, or drive you around, or provide meals so together we can minimize the cost. In that vein, if you have those sorts of things you could offer others, or skills/talents/abilities that we might be able to put to good use during this time, please let us know.

That being said, I think it’s okay to mention that in the next few days, Rave and I are beginning to collect funds specifically to help defray the costs of those who have the time and/or inclination to visit, but for whom money is an issue. It’s not the only reason we’ve decided to pass the hat, but it’s one of the most important ones. We’ll also accrue some costs that come with a long term hospital stay that medical insurance doesn’t cover – gas and parking costs, comfort items, etc. Most importantly, my insurance doesn’t cover any of the sorts of things one needs once home again, like bandages, tape, cleaning supplies, and the like. The nurses usually throw together a “care package” of items to help me out, but when I had the first drain in, we eventually ran out and had to source a lot of this kind of stuff on our own.

When the announcement goes out, there will also be things that people who live too far away, or for other reasons cannot contribute time, resources, or money, can do to be of assistance. For example, we will have a phone/email tree set up so people can be kept up to date with how I’m doing without having to clog Facebook (or share intimate details about my recovery with people I barely know) or having to wait until there’s enough for a blog post. We will need a few “captains” who can be in charge of a list of three or four people; make sure everyone gets information and also to collect questions/observations and aggregate them so the “home team” can address them without having to compose the same response several times. (You know, this sounds so complicated, but I’m actually kinda flattered that there are so many people who care about me and my welfare and want to be kept in the loop. When I stop worrying about the details and look at the bigger picture, I’m always humbled by how much affection there is for me in the world. Really.)

Finally, I have “appointed” my friends and (somewhat unofficial) clergy persons Hugh and Shelly to undertake the spiritual support side. There will be a post before the surgery that will help coordinate all the wonderful prayers, energy, and will-working that people have so generously offered.

For now, I’m very glad to be home and in comfortable surroundings. I’m pleased that I have a pain control plan that actually makes things tolerable, and can be proactive about fighting off some of the infection to make the surgery’s success easier. This was a welcome eye-opener on how Rave and I can better plan for what’s coming to minimize our stress and help distribute the work so no one person is overtaxed and everyone – me included – gets the care they need to get through this.

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You Can’t Get There From Here

November 13, 2012 at 8:21 pm (Living With Chronic Illness, Medical, Tuberculosis (Inactive)) (, , , , , , , , , , , , , , )

If you follow me on social media (primarily Facebook), you’ve gotten little updates on the current situation, but I’m going to tell the whole story -albeit in short form, or as short as I can make it- of this current trip to Johns Hopkins. Yes, I am back in the hospital again.

Friday, I took my first dose of Isoniazid (the new TB drug). I waited until then because both of my bad experiences with Rifampin peaked on the second day, and this way it would be a Saturday so Rave could help me or take me to the ER if things got bad. I admit I was pretty nervous when I took that pill, and for most of the morning and early afternoon I was hypervigilant to any ache or pain my body may have.

Part of this hypervigilance makes me aware of how bad the pain in my pannus had become. Ever since the beginning of November, the very bottom of my pannus has been extremely sore and swollen. A light graze against a doorjamb or accidental poke made me shrink back in pain. I hadn’t realized up until then how much it was affecting me, and even the way I was walking.

But I went about my day, watching Glee and getting ready to write my silly Glee blog. I took a break and was sitting on the porch reading Twitter, and I realized my belly pain had increased, and I was feeling a little antsy. I got worried, as Rave wasn’t due home for another three or four hours, so I went upstairs and crawled into bed in hopes that rest would make it better.

I felt marginally better, although I had started feeling like the room was pretty warm. I struggle with odd temperature disregulation all the time, so I didn’t think too much of it. Rave brought me up dinner but I wasn’t all that hungry.

In fact, halfway through I started feeling overly warm and dizzy. I laid down and decided to take my temperature. Good call – it was 101.5. This was troubling, though.

I have three medical things I’m focusing on right now: the wound on my back, the new TB drug, and my pannus/the upcoming surgery. For all three, I am supposed to go to the ER if I have a fever over 100, nausea, lack of appetite, pain/discomfort, etc. I decide to wait a bit and see if eating had somehow spiked my temperature, but three hours saw no decrease. It was time to go.

Johns Hopkins (JH) is about an hour and a half from where we’re temporarily living in Hagerstown. It was a long, tense ride as I felt increasingly uncomfortable and alternately cold and hot. When we arrived, there was a collection of JH’s security cars parked around the entrance of the ER. Turns out it’s a “crime scene”, according to the policeman who directs us into the ER. A judicious welcome?

Once again, the big whiteboard announces there is a four hour wait to see a provider. I have to admit, when I saw the motely crew of all sorts of people waiting, and the remnants of adrenaline from whatever “crime” took place before we got there, it made me think of Stefon. On Saturday Night Live (shut up, it is not dead, and I have a giant boycrush on Fred Armisen) Bill Hader has this reoccuring character on the Weekend Update segment named Stefon. He is an effeminite hipster club boy who comes on periodically to recommend the newest hot spots, usually in conjunction with a holiday. I’m writing this entry on my phone, so I can’t embed a video, but trust me and go look Stefon up on You Tube.

Now that you’ve done that, you’ll understand what the ER was like when we got there. Luckily, I was called to triage quickly and then fasttracked into the ER in less than an hour.

This makes me happy because we didn’t have to wait, but anxious because that’s *never* happened to me before (going into the ER straight from triage, except in the case where the ER was empty or having a slow night). It turns out we’re just going to wait in a private ER room instead, because I think we were there for at least four hours before we saw the actual doctor.

It turns out it’s not the TB drug; they’re not even concerned. It is, however, that my abscess has regrown to almost exactly its old size, except this time it’s full of pus and other infected tissue. A new drain is inserted, and they admit me to drown in IV antibiotics and see what happens. There was some talk of doing the panniculectomy now, but the plastic surgeon thinks that it’s best to try to remove as much infected tissue as we can before we go cutting it up.

They’ve also noticed that new parts of my pannus are showing signs of other infections. The pain from all this crap is bad, and unrelenting. I am struggling with the doctors for adequate pain control. At least they had a glimmer of understanding of my opiate tolerance; when they reinserted the drain this time, I was healthy enough for twilight sedation. Two or three miligrams of Versed and a few of dilaudid and I am still alert and oriented? Even with that, it takes me a day or two to get back to the same treatment I had when I was here last. Finally, as part of the steps towards discharge, the surgeon I really like (whom I have nicknamed Dr. Awesome) figures out a pretty workable solution that relieves a real portion of my pain *and* is something I can continue at home. (She increased both the amount and frequency of the opiates I take for chronic pain. She is the first to state openly that although the 2mg dilaudid IV that I’ve been getting feels good when it’s first pushed, it is still too small a dose for someone with my level of tolerance.) Now we’re hoping that the pain management doc will sign off on the increase, at least temporarily, so I can go home with my pain managed and supported through the surgery in December.

Once again I go through IV sites like cheap pantyhose, and the subject of a central line comes up but too late to do me any good. The antibiotics are shredding my thin, weak-walled veins. Both Zosyn and Vancomyacin have that effect on people with typical veins, and it’s just exacerbated with all the other meds they inject into my line.

One of the challenges during my last stay was that when they cultured samples from my abscess, they weren’t able to grow anything. This doesn’t mean there isn’t an infection, but that it is likely not a run-of-the-mill one. This is why when I came home last time there was a lot of talk about MRSA. However, this time the culture does grow something: Pseudomonas. When they tell me this (during a rushed physical exam with a student present), I fight back tears and I don’t know why. The doctor doesn’t give me any information about it.

When I get a chance to both consult my favorite doctors (Drs. Wikipedia and Google), it becomes more apparent why I had such a strong reaction. One of my friends who had died from HIV had Pseudomonas, and it’s one of those infections that people with healthy immune systems are rarely affected by. This is yet another diagnostically relevant piece of information – although my doctors and I have frequently used the term “immunocompromised” to describe my situation, I don’t have any real medical proof (other than observation and/or anecdote) that my immune system is weak.

There is the diabetes, which at any point in the game can weaken or damage a person’s immune system, but it bears repeating that regardless of how morbidly obese I am, my diabetes is pretty mild. My A1C hovers between 5 and 6, and frequently lowers to “pre-diabetic” levels. My blood sugar numbers are reasonable as long as I am not in severe pain or under a lot of stress. (Or eat a lot of processed sugars, which I have made good strides in that department.) Overall, my diabetes hasn’t been chronic long enough, or severe enough, to make it a viable scapegoat for this.

Before anyone goes there, I am HIV negative, although I did have a pretty serious scare in the 90’s when I had several false-positives in a row. At this point in my life, my exposure risk is low and getting lower. I haven’t had penetrative sex with a factory equipped penis in over two, almost three years, and the chances of it happening again is pretty low. (A tale for another day.) I do still pierce strangers both as pick-up play as well as suspension work, but I’m pretty well trained on how to avoid fingersticks and how to treat one to lower my risks.

The thought I’m having, and honestly have been having for years now, is Lupus. Yes, I know, it’s never Lupus, but sometimes House is wrong, too. My mom was diagnosed with SLE in her 30s, and it made her pretty sick right away. There is some heredity with SLE, and that link is most often between a mother and her first born daughter (which would be me). All along this journey towards diagnosis, I have requested the most basic screening test for it and have yet to get a result. However, there are lots of cases where someone has a negative ALA and still has Lupus. I am seriously considering contacting a rheumotologist and being seen before the surgery to start the longer process of ruling everything else out.

Anyway, regardless as to what lowered my immune system enough to bring on this infection, I was actually lucky. There are two strains of Pseudomonas: one that is “pan-reactive”, or that can be treated with standard (but strong) oral antibiotics; and the other is similar to MRSA, in that it doesn’t react to anything but the very strongest antibiotics. I have the former, so I’m taking a combonation of Cipro and something else (I can’t recall the name).

When they admitted me, they said it was for two or three days. Last time, it turned into ten. This morning makes it day seven, but there is a strong rumor that I am getting discharged today. We’re waiting to hear from my pain doc, approving the much stronger dose. I’m also thinking they’re also watching to see if there has been any reactions with all the new-to-me meds. I am really hoping I am released, as it has been more difficult than usual to get enough quality sleep, and I have started havin mirco-sleeps (where I go from being awake and focused on the day ahead to falling into a deep sleep in seconds, dropping whatever is in my hands and even snoring; only to wake up a moment or two later unaware as to what happened. I also find myself “coming to” having struggled to continue writing. I’ve had other sleep-related episodes and even asked if maybe the doc would want to add a sleeping aid so I could sleep through the night.

It’s hard to write about this hospital trip without mentioning a real difference between this one and the one before, but it touches on an idea I have for another DfaD post, so I’ll just put it out there and elaborate later. Last time, I was here for ten days and had somewhere in the ballpark of ten to fifteen visitors; this time, I am going into my seventh day and I have had three. I know that last time I made several FB posts requesting visits; this time, I was careful to make a single request that said I was interested in visitors (and then 2 posts looking for someone to give Rave a chance to go home). Other than two notable visits, including the lovely K and the fabulous M who jumped on a train and rode all the way down from CT to spend 24 hours with me, I was alone every day until Rave came after work. But like I said, there’s a bigger post floating around in this.

So hopefully this is the slightly more detailed version of what the last week has been like. I will definitely be posting to FB/Twitter when I am released and when I get home. For now, I’m going to try to catch a little more shuteye before the onslaught of the “dawn docs” come a’roundin’.

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Three Doc Monty, Shame, and Speaking Up

November 7, 2012 at 12:18 pm (Living With Chronic Illness, Medical, The Journey Towards Diagnosis, Tuberculosis (Inactive)) (, , , , , , , , , , , , , , , )

Before I begin the whole story of my recent adventures in dermatology and infectious disease, I want to address one of the reasons it has taken me this long to write this entry. I have written about all sorts of medical problems and procedures – from abdominal surgery to uterine ablation – and although sometimes I get a little pang of “Maybe I should just keep this part to myself”, I never feel ashamed by the fact that I am chronically ill and/or need treatment. Maybe I feel like I wish I had a little more privacy, or that I could pick and choose who reads about what’s happening in my uterus, but never really shame.

When I started to write this entry, I found myself avoiding it. I’d find just about every reason in the book to do something else. It probably helped that I’ve found myself with a little bit of email drama that has been emotionally challenging, so every time I wanted to get out of writing this entry, I went back into my email and re-read some of the posts. But why? Why was I slacking from writing about an experience that was, in turns, funny and serious?

So I posted to Twitter about this odd feeling of shame I was having that I couldn’t figure out. It was my friend Stephanie who said that we are taught as children/teenagers that you can avoid all dermatological problems if you just keep yourself “clean”, and therefore someone who has a skin problem is “dirty”. And that hit the nail on the head for me; for some reason, I felt like I held blame for developing a skin condition, whereas I don’t feel I am responsible for needing a hernia surgery.

With that being said, and me being clear that I haven’t stopped being ashamed about it, but am blasting through it instead, here’s the wacky story of dermatological adventures.

You might remember back a few months ago when I wrote about seeing a great dermatologist named Dr. Lee. It’s worth noting that even in that entry, I mention that his office is in Damascus. I really liked him a lot, and so when I had an odd wound on my back that wasn’t healing right (and had been dismissed by another doctor, but more on that later), I decided I would go see him again to figure out what was going on.

Rave makes the majority of my doctor’s appointments. It’s one of those things I really hate about being chronically ill, the constant scheduling and paperwork and other inconveniences that come with seeing yet another doctor, so when I’m left to my own devices I walk around the house for months saying, “I really need to call and make an appointment.” To keep me from walking around my house to death, Rave helps me out by making appointments for me that magically just show up on my google calendar. It’s nice to have someone in my life who is actually willing to help with the parts of being chronically ill I hate the most.

So I told Rave to call Dr. Lee and see if we couldn’t get an emergency appointment.

Keep in mind, that I have seen (no exaggeration) more than 20 medical practitioners in the last five months or so, and that they’ve been located all over the area, from Washington DC to Baltimore, from Rockville to Frederick. So at times, it can be hard for anyone to keep track of which doctor has which specialty and where their offices are located. Add upon that, that several of my doctors have more than one office in the the area and so I’ve been seen in two locations for the same doctor, and it gets even more complicated.

Rave recalled that I was seen at a place that had Dermatology in the name, like “The Dermatology Center” or “The Center for Dermatology”. She also knew that when I saw him, it was pretty close to my house in Germantown. So she searched for “Dr. Lee, dermatology, Germantown” and got a hit for The Dermatology Center. However, that Dr. Lee is Dr. Joseph Lee, who doesn’t practice in the Germantown office. The Dr. Lee I had seen and loved back in June was Dr. David Lee, who practices at Dermatology and Surgery Skin Center in Damascus, which is about a fifteen minute drive from Germantown.

She called the Germantown office and told them about the situation and asked for an emergency appointment. They gave her one, in Bethesda, at 9am. As I am now living in Hagerstown, Google Maps mocks me with it’s estimated “1 hour and 10 minutes”; at rush hour going in the direction of rush, I’d have to leave here at somewhere around 6 or 7am to make sure I got there on time. Not to mention that the friend who was taking me was driving up from Sterling, VA, so she’d have to leave at something like 4. I thanked Rave but told her to cancel the appointment, as 9am in Bethesda is not doable.

She calls the next day and they tell her I can be seen that day at 3pm. Rave calls my friend Rebecca (who was a trooper!), who jumps in the car and heads in my direction. The first hiccup is that lately, between having a cold and being on 50-80% bed rest means that I usually sleep pretty late. What happened on my end is that I woke up, looked at the huge number of missed calls and text messages, and pieced together that I had about ten minutes to get my ass in gear and be downstairs waiting for Rebecca. This is somewhat difficult for Dels, but somehow I pulled it off.

We start to exit Hagerstown, which has a preponderance of very narrow streets. As we were trying to navigate our way out of town, someone opens their door into our lane and clips the side mirror. Luckily, no one was hurt and the other car didn’t have any noticeable damage, and the other driver was much more concerned with our well being than trying to pick a fight.

I honestly don’t remember when I realized we were going to Germantown and that Dr. Lee’s office was…somewhere else. I couldn’t, for the life of me, remember what town it was in. My best guess was Olney, as I remembered it being in a town I don’t visit often. Maybe it was Frederick? I think in my head I assumed that maybe Dr. Lee had another office in Germantown I didn’t know about, so I didn’t think too hard about it.

When we arrived at the office, they had no record of me at all. No patient records, no appointment. I take several deep breaths, and tell them repeatedly that I had seen Dr. Lee in…Frederick? Olney? The receptionist tells me he doesn’t have offices there. I’m trying to rack my brain to figure out where it was, and at the same time plead with the receptionist that we had gone to great trouble to be here, so could I please be seen? They finally agree to let me see the doctor, and I had to quickly fill out all the new patient information stuff I hate so much.

So now, a little background on why I needed to see a dermatologist at all. About a month or maybe a little longer ago, a strange wound showed up on my back. At first, it just looked like a red, raised stripe. It didn’t bother me at all, so I basically wrote it off to a scratch or pressure wound or something else that would heal on it’s own. It got bigger, and deeper, and more infected looking, until I found myself in a great amount of pain when I tried to sleep on my side or back, and I am a dedicated side sleeper.

I had an appointment coming up with an infectious disease nurse, to take out my PICC line. While I was there, I mentioned I had this wound on my back that was becoming much more bothersome, and she took a look. As it happens, ID and Derm share space at this clinic, so she brought two dermatologists over to take a look. Almost immediately, they agree it looks like HSV or shingles. They take a sample to test and send me on my way.

I go back for a follow up, and this time they have me being seen by a doctor (I needed clearance from ID to proceed with my plans for surgery). She was the queen bitch of all bitchy doctors I have ever been to, bar none. I mean, Dr. WLS was an asshole, but at least most of the time he was trying to appear nice. She didn’t want to be there, she didn’t want to see me, she wanted to spend the least amount of time possible around me, and she made that all readily apparent.

She informs me that the tests were negative. I tell her it’s gotten deeper, more painful, and more productive. She takes a glance – and I really mean a glance – and says, “Well, it looks like it’s healing now, so nothing to be done.”

I go home and I know she’s full of shit, but I decide to wait a week or two and see if she’s right. Absolutely not. At this point it has become so painful I cannot lay down unless I have a lidoderm patch on it, and now there is a big ulcer at the top of the stripe and the stripe is widening and more red/productive.

So this is where the Dr. Lee/Dr. Lee circus joins the story. In fact, I see Dr. Yu, and he is very concerned that this could be MRSA. He takes a culture and prescribes both an anti-fungal and an antibiotic cream that I have to put on twice a day. (Luckily, I can reach where it is so I can do this without help.) Rave and I notice that within two or three days on the creams, it is looking much better. It’s still red and productive, but less so.

Finally, after no less than six rounds of phone tag, I finally got to talk to the nurse at Dr. Yu’s office (in Germantown, for those playing the home game) and she informs me that it’s Streptococcus, and that he’s adding an oral antibiotic for ten days, and to call him if it doesn’t get better.

My research with Dr. Wikipedia has me confused, though. Although strep can produce several different kinds of skin lesions (including Necrotizing Fasciitis, which is otherwise known as “flesh eating bacteria”, but my thing doesn’t look like that at all) I can’t seem to find one that looks or acts like what I have. The closest I’ve come is possibly Ecthyma, although I don’t think my lesion is quite that deep. Although Impetigo is also caused by strep, and the grouchy old man in me would love to whine about his impetigo, it looks and acts nothing like that either.

So I’ve decided to stop playing Dr. Wikipedia and just take my meds like a good patient and see what happens. However, now that I knew that I had an infection when I saw that ID doc at Johns Hopkins, I wrote the following letter to the head of her department.

I apologize if this is the incorrect email address to use for this purpose, but I would humbly ask for your help in getting this message to the right recipient.

My legal name is [not yet Del Tashlin]. My DOB is [numbers].

I was seen by Geeta Sood in the ID clinic at Bayview on October 4, 2012 at 2pm. This was a follow up appointment after being seen by Karen Daniels.

It was clear from the moment she walked in the room that Dr. Sood had not read my chart and did not know why I was there. She was rude, curt, and completely unhelpful. She finally acquiesced and left the room for over 20 minutes to read my chart, and when she returned she was incredibly short with me and dismissive.

She actually said, upon her ending the appointment, “I hope I never see you again.” while shaking my hand and the hand of the person I brought with me.

She made medical mistakes that have created further issues for me. I had a wound tested for hsv and varicella. Those tests were negative, and although I reported the wound had grown, and was incredibly painful, she took one short look at it and declared, “Well, it looks like it’s healing, so nothing to be done there.” I have since been diagnosed with a strep infection, which if it had been caught earlier would have meant less aggressive and easier treatment. But since it was clear that Dr. Sood wanted to spend the bare minimum amount of time with me, it was completely overlooked.

Also, she prescribed a course of Ioniazid for my inactive TB, with absolutely no plans to follow me to monitor for liver issues. She was rude when I asked what symptoms should worry me/send me to the ER, and was completely dismissive of my concern that since I manifest many of those symptoms already I wouldn’t know the difference between my everyday experience and hepatits or other liver infections. She just retorted, “You’d know.” As she had never seen me before, she dismissed me trying to explain that I suffer from chronic nausea, vomiting, and lack of appetite (which, if she had read my chart and seen that I had lost 40 lbs in less than three months, she would have known), and also have dark urine and muscle/joint pain on a regular basis. It was only when I filled the prescription and read the materials did I realize that I need to contact a doctor for monthly liver panels. This was not even mentioned to me by Dr. Sood at all.

Overall, I had an incredibly negative experience with her, and now that I know that I have had an infection for over a month that she could have treated if she had just shown any interest in my welfare at all, I feel strongly that I need to report her negligence to someone in a position to see that she reads this, and at least it be added to her HR file.

If I don’t hear back from someone at Johns Hopkins in one month’s time, I will have no other option than to file a complaint with the Maryland Board of Physicians. This is not my intent, but I feel very strongly that her conduct was more than unprofessional and rude, but negligent. I would rather see her be dealt with inside of the structure of Johns Hopkins (which I have had stellar experiences with, save the ID department) than have to go to such measures.

Thank for your time reading this, and helping me to find the correct place for this to go. Please feel free to respond to me via this email address.

Thanks again,
[Del, who has stopped taking shit from shitty doctors]

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