Finding New Depths

April 25, 2014 at 5:06 pm (Chronic Pain, Disability, Medical) (, , , , , , , , , , , , , , )

It’s been a while, hasn’t it?

It’s my fault, of course. Not just because I am the blogger in the equation, but because the current health struggle is complex. Probably the most complex since the surgery last December. It hit me at a very inopportune time, and has been one of the most difficult depression triggers I’ve dealt with. I am hanging in there, doing my best to keep pushing and keep living and not give in to inertia, shame, fear, and pain.

Part of why I am writing this post now, why I have come out of the dark, is that I need you. I need allies in my current situation. I need people who know what’s going on to answer the questions and comments people will make behind my back. I need people who will understand why I might be making different decisions, why I might not want to talk about certain things, and why I might walk away from conversations that stir my turbulent emotions any faster than they’re already dizzying me. My work “season” is about to begin, so hiding at home is no longer an option.

Here’s the story, as best as I can relay it. Back in early March, I noticed my legs and ankles were getting very swollen. I had never understood how much vanity I took in having slender, muscular calves and feet until I didn’t have them anymore. I also developed shortness of breath, even when doing the smallest things – I would take the six steps into my bathroom and have to recover. I started having a deep chest cough, so I thought maybe the breathing problems were just a portend to a chest cold/bronchitis/etc. These symptoms progressed, getting more and more difficult to function. It felt like someone had wrapped my chest in an ace bandage.

The next symptom is the hardest to write about, so bear with me. I have these two pairs of jeans that I call my “jeans of requirement” (a vague reference to Harry Potter). These pants fit me for the last ten years, from my heaviest through my medically unsafe weight loss and back again. For some reason, the way they’re cut or something, they might fit differently, but I could rely on them. So you’ll understand when I tried to put one of them on, and could not fasten the button, I was downright scared. I took a deep personal inventory to examine the possibility I’d gained so much weight that they just wouldn’t fit, but in the end I know I’ve been eating well, getting up and moving when I can, and hadn’t been particularly laid up more than usual.

Then we noticed that this was happening all over my body. My feet became so swollen my shoes didn’t fit. The skin on my calves and lower thighs was stretched so tight, the smallest touch was painful. My fingers and arms were also chubbier than usual, and finally when I saw pictures of my face I noticed that even my neck and cheeks hadn’t been spared. I got really, really scared.

I started a new round of doctor’s appointments, and the first thing that gave me a little solace was that my doctor confirmed that I was suffering from edema (swelling), and specifically anascara (swelling that happens all over your body). It is most pronounced in my lower abdomen and legs/feet. It was also determined that my shortness of breath was because of the swelling putting pressure on my lungs and diaphragm, making it harder to get deep breaths. Swelling like this is a big symptom, but it could have hundreds of reasons, so this is why if you follow me on Facebook, I’ve been going to a lot of doctor’s appointments lately.

To put it in perspective: one doc’s estimation after looking at CT scans of my body, is that I am currently carrying 50-70lbs of a combination of fluids in my body. This is not “I am PMSing and feeling kinda bloated”; this is “The pants I accidently ordered three or four inches too big are all I can wear now, and even they are tight.” None of my shoes fit comfortably. I had to buy special socks because normal ones were causing deep indents in my ankles.

I had some hope in the beginning that this would be more straightforward than my other medical mystery solving tours, but that’s been shot to hell. I’ve basically been the hot potato that various specialists throw at each other. And like any other mystery solving tour, doctors find other things that aren’t related to the issue but need to be addressed – one highly suggested I see an ophthalmologist to rule out edemic pressure on my eyes causing my double vision, but it turned out I’ve just had a lazy eye since childhood that no one ever diagnosed so now it’s bad enough to cause most of the weird eyesight I’ve had lately. The eye doc wants me to follow up with a different specialist, but obviously that’s been put on the back burner for now.

Another reason I haven’t felt like narrating this part of the journey is that many, many different possible diagnoses have been suggested and/or tested for, and most of them are pretty major/life changing kinds of diagnoses. Since I’ve already told a handful of people, I guess it’s safe to say that 2 kinds of cancer are near the top of the list right now. But I don’t want to be the boy who cries cancer before any solid diagnosis has been made. I can say that heart failure and/or other heart problems have been ruled out – my ticker seems to be doing pretty well, all things considered.

When it comes to real life stuff, the swelling has killed any sense of self-esteem I usually have in abundance. I look fatter than I have ever been my whole life. Even having seen the images that prove the “weight” is NOT fat tissue didn’t really help. There are places where the swelling is pulling my skin in very painful ways. I hate how I look. I hate how I feel. I hate that my pannus – that part of me that had been cut away – has fallen again due to the swelling. There is pressure on my surgical scars. I can’t walk more than a few steps before the pain becomes intolerable. Although I’ve always gotten dirty looks from people when I’m in my wheelchair (the looks are meant to communicate “If you got up and walked around, fatty, you probably wouldn’t need that chair”), it has definitely become more pronounced since the anascara.

It has not been unnoticed that the one part of me I had come to some radical acceptance with is now the one brought to the forefront of my attention. Is there a size or weight where being fat is less acceptable? You hear things like that from people all the time – “I’m okay with being 240, but if I cross into 300 I’d shoot myself.” Or “I’m okay with being overweight, but I’d never want to be ‘morbidly obese’.” I know that you can’t let what others say interfere with your self-esteem, but it’s also true that these ‘throw away’ comments have to stick somewhere.

Because the universe is a big cosmic joke, I’m supposed to be getting ready to teach at a sacred sexuality event next weekend. I am teaching some things that I am pretty uniquely qualified to teach, but the idea of being at an event about sex and sexuality feels pretty horrible while I’m trapped under all this fluid. As Rave often says, “I’ll just put on my educator hat and get the job done”. But underneath that hat, I am pretty depressed.

Part of what I’m asking for help with is if you’re going to THE Beltane next weekend, or know someone who is. I am sure there will be people who will be asking about my apparent weight gain, both to my face and behind my back. I know some people will be curious out of a legitimate desire to know what’s going on with me, too. But I’m just not in a place where I feel like retelling the story over and over again. Nor do I want people trying to make me feel better by throwing an arm around me and telling me I’m still attractive or whatever. I just want to teach awesome classes, have fun with my friends and play partners, and spend 4 days not making phone calls and emails to my various doctors or looking for rides to appointments. If you can do anything to help create this safe zone for me, I would be deeply appreciated.

(In particular, the owner of the location tends to comment about my weight whenever he sees me, and I am literally dreading what he will say when I get there. If you are genuinely close with said person and can explain things to him, that would help too.)

So where I stand with the mystery hunt is that cardiologist has cleared me, and infectious disease did find an infection, but that’s not the cause of the issue. Next is either endocrinology or nephrology, once I get through a sleep study (because there’s a infintessimal chance that this could all be because my CPAP needs to be reset. It would be wonderful if it turns out to be that easy, but I’m not placing any bets.)

So there’s the update. I am looking for help with two things:

1. A comfortable recliner. It seems that sleeping in a chair is working better for me right now, but the recliner we have is very, very low to the ground and getting out of it hurts my knees a lot. I don’t care if the material has holes or scratches in it, just that it is tall enough for me to get out of easily, and that the reclining mechanism works well. Rave has the exact measurement for how tall the chair should be, so if you are local and want to help us hunt on Craigslist and Yard Sales you can email her at delandrave at gmail dot com.

2. Volunteer Drivers. I’ve been going to many more appointments lately, so my regular pool of drivers are getting a little burned out. I have my own car, which I prefer because I am comfortable in it, but I will ride in other cars as long as they are high enough off the ground. I particularly need drivers the times it is most difficult to find them – between 11a and 6p, Monday through Friday. I have appointments in Hagerstown, Baltimore, Lutherville, and Frederick. The actual appointments are usually an hour long, plus travel time. It is vitally important that we arrive on time, and I would rather be 5 hours early than 5 minutes late. (Not literally.)

Drivers must also be able to lift, pack, and push my wheelchair. You are welcome to do a dry run on a day when I don’t have to be somewhere – you can come over and push me around the mall or a store or something to get the hang of it.

I can’t pay right now – money has been a real issue lately – but I can offer a variety of barter. I can send a “Rave for a Day”, who is happy to do laundry, clean and organize areas, babysit, mend torn clothing, etc. She’s pretty spectacular and multi-talented.

Again, if you might be able to help with driving, email delandrave at gmail dot com.

Permalink 11 Comments

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]

Permalink 10 Comments

Cutting Away the Heart of the Matter

September 20, 2012 at 5:25 pm (Hospitalizations, Mental Health) (, , , , , , , , , , , )

I’ve been spending the last few days weighing back and forth on how much, if anything, I was going to talk about the upcoming surgery I face. It’s high risk, and a big deal, and it’s messing with my head in a number of ways. I’ve had several divinations done about it, and the situations surrounding it, and one point of view came out during a session that I hadn’t thought about.

The fact of the matter is that they are cutting away a good portion of my panniculus, sometimes called a pannus, or an “apron”, or in more direct terms, the hanging part of my belly. The doctors estimate that I will lose 50lbs of tissue during the surgery. And for some reason, when I heard about this, I had a very nuanced reaction, but one of the major emotions was shame.

I can’t say with a straight face that I do a lot of work in the fat acceptance community, but I do support it both by being an outspoken voice for it, and sometimes financially. I have come a long way, personally, from hating the fact that my genetics dictate the size and shape of my body, to accepting and even loving the unusual nature of the habitus I’ve been given. I even teach classes aimed at people who need ideas on how to better explore and use their bigger bodies to express themselves sexually. I do not, and have never seen, my size as a disability. It is a thing to be celebrated and appreciated, not abused, jeered at, and hated.

I, like many others, went through periods where I decided that I needed to change this – and I’ve approached it from all matter of healthy and unhealthy ways. I was labeled anorexic when I was in psychiactric care, which may be hard to believe when you think of the public images of that disease, but one need not be 70 lbs to starve oneself, to deny oneself bodily necessities as some sort of punishment. In fact, many survivors of eating disorders are not thin at all, but who started down that path due to the public and private shame that comes from being overweight. Most who know me also know that five years ago, Dr. WLS put me on a protein-shake-only diet in which I lost a significant amount of weight – near 140 lbs – in seven months. This is now been identified as one of the causes of my neurological condition.

I have come to accept that this is my body, and I am not what people think. I do not eat piles of fried food, potato chips, and ice cream. In fact, I frequently get told I do not eat enough. I do have certain culinary weaknesses, and I won’t profess that every single thing that passes my lips would meet muster with whomever the diet cult leader is at the moment. I have done the atkins thing, and the south beach thing, and the paleo thing, and the cabbage thing, and the slim fast thing, and the vegetarian thing, and the macrobiotic thing, and the low fat thing, and even that really popular “points” thing. (I will admit I’ve never done the “ship processed foods to my house and that’s all I eat” thing, but mostly because that thing is wacky expensive.)

And here I sit, somewhere around 400lbs.

The reason that I have to have my belly excised is complicated. Part of the reason is because my intestines are in there, and they don’t get proper abdominal wall support, which has been the cause of all of my hernia issues. Another concern is that there is now a buildup of infected and necrotic tissue, possible due to the several surgeries having this pannus has caused. I am currently draining a very large absess that grew to large proportions unnoticed in my belly because of its size. And finally, it does hinder my mobility to a certain degree. So it has to go.

It amuses me that, technically, the surgery I’m facing is a “tummy tuck”. Of course, it’s a much bigger undertaking that some afternoon vanity procedure for a supermodel who ate one too many pieces of pizza. My “tummy” is quite large, and has organs in it, and cannot be supported by something like a binder or a girdle. (Those items just end up compressing my pannus against me, or falling off due to lack of support. Believe you me, it’s been tried over and over again by several doctors.)

So why am I ashamed of this? Why does this seem to be the kind of procedure to have in secret, when no one knows? Why do I have a hard time articulating what is just another medical procedure, when I’ve been so candid up until this point with every little other thing?

I hold my belly in my hands for a moment. I don’t want to be a part of the pressing media shame machine that tells fat people that being fat is a medical disaster waiting to happen. I don’t want to be counted among their statistics of overweight-related surgical and medical procedures. Even the lead surgeon who is performing my panniculectomy said, “It happens to people who weight 145, and who weigh 400lbs. It’s not about how much weight, but how it’s distributed.” I just happened to be descended from the “Eggs on Sticks” tribe, where all of our weight is in our trunk and abdomen. Luck of the draw, I guess.

I also can’t, for the life of me, imagine what my body will look like when the procedure is over. I had a similar surgery a few years ago, but it still left me with a significant apron; this time, they’re going to take as much as they can without putting my body into shock. The reason the surgery is high risk is because I’ll be under for up to 12 hours or longer, between removing the tissue, making sure the infected stuff doesn’t cross contaminate and is completely removed, making sure my intenstines are secure and supported by a strong muscular wall, and that the absesses won’t reoccur. Most of the images I’ve found of people who have had similar procedures end up looking like they have a beer belly. I guess that will help with making me look slightly more masculine?

But yes, I don’t want my personal medical procedure to be proof positive that being fat will lead to these sorts of things. It’s important to remember that other factors contributed to this as well – I won’t talk about whether or not Dr. WLS’s past work on my belly lead to this, because I’m still investigating legal recourse, but from that statement alone you should figure out my stance on the matter. I keep repeating to myself, “It’s about the belly, not the fat”, but it isn’t getting through.

So there’s one of the several trains of thought that I’ve been processing. Maybe you, too, have had to face the dubious line between fat acceptance and medical intervention? How do you reconcile what you were born with, with what the medical industry says is “healthy”? And how do you approach a surgery you’re ashamed to admit you need?

Permalink 8 Comments