Dr. Awesome Saves the Day

December 21, 2012 at 8:03 pm (Hospitalizations, Medical, The Panniculectomy, Tuberculosis (Inactive)) (, , , , , , , , , , )

This was an odd week, full of really big ups, some pretty scary downs, and a lot of moving in between.

I’ve been somewhat quiet around here (although I have been keeping up with my other blog. Part of it has been that I’ve just had more to say that didn’t fit here, but there’s a lot of layers to it.

As you may recall, I am now in the headlong stretch towards my radical panniculectomy on December 28th. I’ve had my presurgical appointments and test, and now it’s just a big waiting game for the most part. We’ve been running around on the Wiggio I set up for those who are actively participating in the process in some way, trying to settle all the last minute arrangements and details for those who are traveling to be with me before, during, and after the surgery. In that, there has also been significant spiritual set-up and ritual prep, and I’m very lucky to have two priests and two shamans I trust who are handling that side of things with little input from me.

Yesterday was a pretty eventful day, even though that’s not what the calendar said when I woke up in the morning. I had a little pulminologist appointment so he could clear me for surgery, and a plan to go get pedicures with my boyfriend and my girl. Nice, slow, lazy day.

As I got out of bed and starting getting ready to shower, I made a move that didn’t take the drain (currently attached to my abdomen by stitches) into consideration, and felt a shocking amount of acute pain. (My boyfriend was on the phone with his very Christian mother at the time, so although I wanted to express my dismay at this discomfort, I somehow managed only to stammer with my mouth closed and make some pretty exaggerated body language.) After a minute or two, it went from being intense to being bearable, so I decided to go ahead and take the shower. As I stepped into the bathroom, I realized my drain site was bleeding – more than just a few drops, but not a deluge. My panicked brain considered calling 911, but then I remembered they would take me to the rinkydink rural hospital in the town I’m squatting in, rather than Johns Hopkins which is about an hour away. So I took another deep breath, and called for my boyfriend. After we got the bleeding under control with some gauze pads and pressure, I made a slightly less panicked phone call to Dr. Awesome (not her real name, unfortunately) who is the general surgeon who is monitoring my drain. I explained the situation to her voicemail and then sat down for a bit to get myself together.

Forgoing the shower for the wonderful bath wipes I keep on hand for days when showers are too difficult, I was still able to get myself together enough to get to the pulm appointment on time. After wrestling with the poor check-in secretary who had to deal with all the convulutedness that comes with a legal name change (first *and* last, which I guess is much less common and therefore doesn’t have a lot of set protocol around it), all the while nurses are in the waiting room trying to sweep up the glass from a broken sliding window. It takes what seems like way too long, and then they ask me if I have the relevant records from Johns Hopkins. I sigh heavily, as I *know* that both Rave and I called them earlier this week to make absolutely positive that they had them, and we were assured that they had arrived. They had not.

I go back into the examination room, and I hear the doctor talking to the nurse about how really, this appointment is kinda pointless without the records, and maybe we should reschedule. I interrupt to add that although they are important, I’m also here for presurgical clearance for a surgery on the 28th and unless they can reschedule me before then, we might as well do what we can. He comes into the room and introduces himself, and sits down. “So explain this to me, then. What are you here for, exactly.”

I sigh. I am all too used to having a new doctor look at whatever information they have about me and have no idea where to start. I explain, “Well, there are two reasons, and I guess they relate to each other. I’m having a radical panniculectomy on the 28th, and the lead surgeon was adamant that I see a pulminologist to get clearance; in the whole crazyness that lead up to needing the surgery, an accidental lung CT found a small nodule in my lung, and I think he wanted assurance that between that, my apnea, and my weight, that I was healthy enough to endure a long surgery.”

“How big was the nodule?”

“About 6mm.”

“Oh, that’s nothing. Standard practice with something like that is to re-image in six months and then go from there.”

I sigh. I have now heard this three times. I get it. I add, “Well, I guess maybe they’re a little concerned because I also have inactive TB, for which I’m now on INH. But I haven’t had any cough, no bloody sputum, all the signs I’ve been instructed to be on high alert for.”

He shakes his head, confused but somewhat resigned. “Do you have COPD? Emphysema? Asthma?”

“Nope. And I’ve gotten through several surgeries without issue.”

“Okay. Well, since I don’t even have the time I need to do the testing anyway, and you seem like you’re going to do fine, I’ll write the letter. I just don’t understand why he didn’t send you to a Johns Hopkins doctor.”

“Well, I tried calling, but none of them had any availability until March; even when I told them my surgery was in December.”

Anyway, you get the drift. He made me a follow up appointment to deal with the nodule after surgery.

Afterwards, I was able to secure an emergency appointment with Dr. Awesome for Friday. Still a little woozy from the surge of adrenaline, I decided the three of us (Rave, Alex, and I) would go down to the pedicure place where we had an appointment as a sort of pre-surgery relaxation thing. I almost cancelled it, because I was feeling kind out of it, but decided to push ahead. It turned out to be a really good idea, especially since Rave had never experienced a pedicure before, and watching her face as they took out the various tools was delightful. We ended the day with dinner at my favorite diner.

Today, I saw Dr. Awesome and it was a really good and calming appointment. She assured me that some of the irregularities about my surgery that I saw on the 14th had been cleared up, namely that it was posted as an inpatient, rather than outpatient surgery (oops) and that they had a bed for me in ICU. She threw two extra stitches into my drain to keep it secure, since I only have to have it for another week anyway. Then she sat with me and talked, about the ragey way Dr. Sacks had spoken to me the week before, and answered some of my questions about surgery and afterwards in a much more calm, collected, and caring way. Before I left, I told her my nickname for her was “Dr. Awesome”, and she blushed.

This weekend looks to be a nice one. We are still in high gear in getting the house ready both for visitors prior to surgery, as well as starting packing since we should be moving pretty soon. We’re also going to be stepping up the house looking stuff, since we’ve only been able to see a few places and none of them have worked out one way or the other.

I will try to write one last entry before surgery, but if I go dark for a week or two, you’ll know why.

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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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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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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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Breathing in, Breathing Out: Tonglen

April 18, 2012 at 1:32 pm (Chronic Pain, Disability, Living, Living With Chronic Illness, Mental Health, Tuberculosis (Inactive)) (, , , , , , , , , , , , , )

There are two topics that have been vying for blog post-dom, and then I realized that maybe they can coexist in a single post. One is how I use the meditative practice of tonglen to help deal with my health issues, and the other is how I struggle with well-meaning people who think I don’t know how to google. I know, it doesn’t sound like they can be the same post, and it may take some literary magic on my part, but let’s give it a try.

First, I should explain what tonglen is. Most Pagans, when utilizing meditation as a way to deal with stressful things, visualize that the in-breath is the inhalation of that which is good/useful/healing for the situation, and the out breath is the exhalation of that which is unwanted/bad/hurtful for the situation. Breathe in relaxation, breathe out stress. Sound familiar?

Tonglen, a Buddhist practice, looks at this practice and sees that it’s kinda backwards. Sure, it works in the visual sense, but not in the physical sense. When someone is inhaling, their muscles are tensing as their body adjusts to the action of the intake. Breathing in, in this fashion, is an action. In comparison, when someone is exhaling, their muscles are relaxing as their body returns to a base state. Breathing out is a reaction to breathing in. Do it now – take a deep breath in, and then let it out. After which one do you feel more relaxed, more at peace, in general, better?

So when practicing tonglen, on the in breath you think about all the people, places, and things that have experienced the same frustration, pain, or stress that you are dealing with. I breathe in, and I think about all the people who are at home right now trying to recover from surgery but real life keeps getting in the way. I hold the breath for a moment, to give myself the freedom to really feel the frustration and pain not only of my own situation, but multiplied by all the other people on the planet who feel the same way. Then, on the out breath, I send love and patience and healing to everyone I am sharing this experience with, including myself. After all, I am a subsect of “all the people struggling with recovering from surgery”.

I find this helps me in a lot of ways. It reminds me that there is no human experience that is not shared. No matter how much I feel isolated because of my complicated medical situation, I know that it’s statistically impossible that I am the only person on the whole planet who is as medically complicated as I am, and I bet there are many who are worse off. So before I even begin the actual practice, just the thinking that leads to it is useful. I am not alone, and people have survived this situation before.

Then I breathe in, and I really allow that sensation of frustration to tense my muscles, to contort my body in whatever way will give me the most focus on how yucky it feels, and how terrible it must feel to all the other people who are suffering in the same way I am. I give myself permission to feel bad about it, to feel a little sorry for myself, to fully engage in my emotions.

And then I let go.

My body relaxes. I cultivate love and patience for other people (which is usually much easier than doing so for one’s self), and then slowly apply that same love and patience inward. The more I breathe, the more relaxation I feel. The less tension I feel on the in breath. The more I feel like I am connected with a band of strong, inspiring people who struggle in the same way I do.

I practiced a lot of tonglen in the hospital. In – I think about all the people who are waiting in this ER, who have been here as long or longer than I have . Out – I send them patience and ease as they get the best possible outcome for their emergency. In – Many people are frustrated at their nurse, who is slow to respond and has her own agenda. Out – I send love to both those who lie in wait for care, and to the nurses who are having a bad day due to inpatient patients.

It is invaluable to me when I get totally overwhelmed by all the medical shit that’s been going on for me. I was just telling a friend that if you had told me six months ago that I was in the calm before the storm, I would have laughed at you. You mean having inactive TB and dealing with a new neurologist is the “calm” time? Right. Now things have grown so exponentially more difficult and complex, I can barely make it through the day without crying.

When I get frustrated, I frequently post to Facebook, or to my blog. As I’ve discussed before, my friends and readers want desperately to feel of use, to do or say something that might help the situation. The current favorite is to tell me to report Dr. WLS to “the medical boards”. They post links that take a few minutes of googling to find. I breathe in, because I, too, have google and have looked at those same pages, usually before you post them. I breathe out, because I know that they did that because they love me and want me to be happy and well. But what I can’t seem to communicate effectively is that my medical situation is a big tangled web, and the only person who really knows how it all works is me. I’m willing to share it with someone who really wants in, but being in means a lot more than reading my blog and trading a few emails. It means going with me to the doctor’s appointments to hear what they’re saying. It means personally understanding what it’s like to have doctor’s appointments three days a week when you don’t drive, and most of them would cost more than $50 by taxi. It means understanding that I, too, have Google, and do actually spend time researching things like where to effectively complain about Dr. WLS.

You'd think this is an exaggeration, but replace Blondie here with a fuzzy haired Del and it's about accurate, books and all.

I breathe in for all those who hate Dr. WLS for what he’s done to me, and I breathe out patience. Yes, technically I could probably seek out another surgeon to take over my aftercare. But they aren’t the surgeon who performed the surgery, and therefore they’d be relying on whatever Dr. WLS tells them (and not me, because I am not a surgeon). This is what I was told when I cold-called another general surgeon about possibly being seen as a ‘second opinion’. Starting from scratch with a brand new doctor in any situation is difficult, and I know this because I’ve seen five different neurologists, two different infectious disease doctors, two different primary care physicians, etc. So in the end, I choose to get frustrated and abused by Dr. WLS then go through the rigamarole of seeking out a different surgeon. If this means you’d like me to stop complaining about him, because it’s my choice to see him, then I will.

I try to illustrate my current medical situation this way: Imagine a Del. Now imagine over the Del’s head are a series of balloons. Each one represents one of the medical situations I’m currently facing. One balloon says, “Emergency ab surgery/recovery/scar in a place on the body under a lot of stress/too much edema”. Another balloon says, “Unexplained chronic pain”. Another says, “Needs a D&C and ablation or could get cancer.” Another one is labeled “Has inactive TB, which could go active at any moment, and really the only organ we know how to help if it gets attacked is the lungs. Also, you have a history of infection, so it’s likely to go active.”

Kinda like this.

For any one person, this balloon (pick one) would be their entire existence. They would be focusing all of their free time on researching what to do, contacting doctors, going to doctor’s appointments, taking whatever treatments are prescribed, and changing their lifestyle to accommodate this balloon. I don’t have that luxury. I have too many balloons, so many that they’re threatening to carry me away to a place called Death. I’m doing as much as I can to keep up, without forgetting that I’m also a human being that needs to eat and sleep and spend time with friends and watch Glee and feel normal from time to time.

Maybe you’d handle it differently. Maybe you’d go all gangbusters and spend every waking minute doing whatever it takes. I can’t, because I feel like crap and I’m tired all the time and I’m in a lot of pain and there’s only so many kinds of effort I can give before I can’t anymore. In the end, it’s my body and my life and I have to do with it what I think is right, and many times I choose the “feel like a normal human being” over the “holy crap balloons”. On average, I have at least one doctor’s appointment a week (these days, it’s closer to two or three). I make at least six phone calls, emails, or other forms of contact dealing with my medical situation a day. I spend an hour or two with Google, looking related tI hings up (everything from who to send the complaint letter to about Dr. WLS that will actually matter, to how other people dealing with chronic pain cope with the added discomfort of surgical pain, to how long I can put off that D&C until I’m really risking cancer).

But for now, I will breathe in all of your frustrations, all of your desires to be of use, and to be helpful, and the feeling I know intimately of seeing someone you care about suffer and know there is nothing you can do. I breathe out love, and patience, and compassion, and understanding. I do love all of you, even when you drive me a little bonkers.

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Nothing Is Ever As Easy As You Think

November 29, 2011 at 4:55 pm (Medical, Tuberculosis (Inactive)) (, , , , , )

A short medical update:

I came home from Thanksgiving Day weekend, having taught at Brimstone, an event up in NJ. I was feeling sort of run down and wonky, and then there were a multitude of situations at the hotel which challenged my  health – like rooms that were either boiling or freezing, including my hotel room.

Top that with my assigned roomie (a lover of mine, so I lucked out, but still assigned) was recovering from bronchitis, and my fate was sealed.

I started the TB med on Monday morning.

So I woke up this morning around 4, both sick as a dog and suffering from the same god damn symptoms as last time I tried the TB meds.

I tried treating the “sick as a dog” part on my own, but it quickly proved to be bigger than home remedies. I got in to see my PCP, and got my ID on the phone.

I’m taking antibiotics for the sick, and the TB meds have been stopped again. Hopefully I can nurse my way back to feeling normal from the interaction this time, rather than going to the ER.

I’d be angry and disappointed, if I didn’t feel so freaking sick.

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TB meds! Neurologist number five!

November 17, 2011 at 11:57 pm (Medical, Tuberculosis (Inactive)) (, , , , )

A quick update on the medical front:

I saw the (somewhat saner) infectious disease doctor, and I start my TB treatments after I get back from Brimstone. I’m grateful that I can finally start, but I’m also hesitant because these drugs have a reputation of tearing you apart. I have to get regular liver tests, and stay away from things that tax my liver; I’ve also heard they wreak havoc on your G.I. systems. On top of that, they will make my pain drugs work less, if at all. So though I’m happy that I will be TB free in a few months, those few months scare the crap out of me. The good news is but I will see my pain management doctor after I’ve been on the TB meds for a couple of weeks; hopefully, he’ll have some ideas as to better manage my pain once we know exactly how ineffective the narcotics will be. There is a little fear that I will suffer a similar reaction as I did in June (I was hospitalized due to an interaction between fentanyl transdermal patch and the TB meds that caused me to go into immediate withdrawal even though I was wearing a brand-new patch); the ID doc said that  if there is any wackiness I should go to the ER. Let’s hope that’s not what happens.

I also got a surprise phone call from the new neurologist today. I was supposed to see them in mid-December; and was angsting because I have pretty severe nerve pain and December was a long way away. it seems they had a cancellation for Friday (tomorrow as of this writing) which makes me a very happy Del. it also means that there’s a good chance I will get a script for an MRI — those of you who know, know that I have been looking for an MRI to accommodate me for almost a year now; Johns Hopkins just got two new machines that sound like they may fit the bill. If that works out, I may be able to get my pain management doctor to play nice with the neurologist and see if we can’t come up with a better solution for my neuralgia.

so wish me luck tomorrow with neurologist number five. I’ve worked with him before; he is also a sleep study specialist and was the one that prescribed my CPAP. I really enjoyed his candor; Ninja has been seeing him for neurological stuff and really likes him. His office is about 25 minutes away from my house; not quite as bad as going to Johns Hopkins but not as convenient as neurologist number three (who blamed everything on my opiates).

 

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Doctor Ethics and a Development.

October 21, 2011 at 7:01 pm (Medical) (, , , , )

Okay, an actual medical related post with no spooky foo, I promise.

After two months of run-around, I finally have my very own wheelchair in my possession. I plan to use it to lengthen the amount of time I can be out and about, as I have found that often it is too much walking that makes me both tired and in a lot of pain at the end of the day. So this addition is a good thing, in my book. And the diagnosis the pain doctor used to legitimize my prescription was myalgia/myositis, the latter of which is new in my book.

Now to the doctor ethics. I posted on some of this on Facebook, so you may already be acquainted with the situation. I had been seeing Dr. Ruth Jacobs, an infectious disease doctor in Rockville, MD for the past few years. The way I got to her was a little strange; I had been seeing another ID doc but when I was hospitalized with an infection he wasn’t available and sent her. I did six months of follow up with her, and in that way you get when you see the same doctor for a long time, got used to seeing her when I needed an ID doc.

Well, I saw her in February and it was her who found the TB. It was her who got me admitted when I was having the bad drug interaction between Rifampin and Fentanyl. It was also her who, after that experience, refused to treat the TB further and suggested I contact the local County Department of Health, which I thought was a little weird. In the middle of all of that, she noticed on my intake form that I had sex with multiple partners, and decided to give me a 30 minute lecture on STIs and how safer sex practices are not so safe. I tried to interject and explain that the sex I engage in is not all that risky, and that I actually knew quite a bit about safer sex practices and STIs – to no avail. I also noticed that when I came to appointments with my patient advocate, who is (sorry, hon) a pretty obvious butch lesbian, the doctor continually asked me where my husband was.

I never really thought about it until I needed to google her to find her office number. See, all week I had been trying to make an app0intment to see her (she wants to see me before re-starting the TB meds) and got really odd responses from her secretary. Once she asked if she could call me back, and never did. Another time she asked if I could call back tomorrow. A third time the phone rang and rang with no answer and no voicemail. So I thought maybe there was another number I needed to call to make an appointment, so off to google I went.

What I found were two YouTube videos.

Of the two I found, this was the least offensive. Obviously, a doctor with issues about the trans community may not be the best fit for me. I never discussed my gender stuff with her, so to her I probably just looked like a butch lesbian who happened to be in a hetero marriage. In this video, she represents a right-wing “Think Of the Children!” sort of activist group that is generally anti-gay, and claims that allowing trans people the right to not be harassed means that young girls will almost definitely see cock in women’s dressing rooms. Um, okay.

It is the next one that is pretty bad. I warn you, this video has been edited to give some of the worst comments up front, and then you get the mostly-unedited version of her testimony after the credits. This is the same doctor testifying to the DC governing body against gay marriage, but mostly she talks about HIV/AIDS, even after it is pointed out to her that one doesn’t have much to do with the other. Her point seems to be that legalizing gay marriage would force sex education classes to teach anal sex as being as normal and safe as vaginal sex, even though anal sex is “dangerous” and many people (especially young black men) get HIV from anal sex. If you’re wondering about lesbians, it’s addressed in the video.

Two things – although she uses medical language, it may not be completely work-safe (She talks about anal sex a lot), and it is really worth watching all the way through if you can, because one of the board members puts her in her place and it leaves you feeling better about the world.

So with all that in mind, I have decided to go to another Infectious Disease doctor. It may have been a GodHammer that kept me from being able to make the appointment until the Great Google told me of her wicked ways, or just dumb luck, but either way it’s probably for the best. I’m going back to the other ID doc, and may have to start some of this silly TB stuff all over again, but in the end I decided it’s worth it to be with a doctor I can be honest about who I am with and not have to worry about it affecting my level of care.

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