Spiral

April 21, 2015 at 7:59 pm (Congestive Heart Failure, Death and Dying, Hospitalizations, Living With Chronic Illness, Medical) (, , , , )

It’s been some time since I updated ye faithful readers as to what is going on with me medically.

Some of you may know that I’ve spent more time in Johns Hopkins than I have in my own home since August 2014. I was diangosed with right-sided heart failure and we struggled to figure out why I kept slipping into volume overload (when your body has a lot more fluid in the tissues) after being discharged. There are a lot of theories, but the story is about to change, so don’t jump to leaving a comment just yet.

When I get that swollen, the infected tissue from my pannus starts to hurt tremendously.

So the status quo since August has been:

  • Go to Johns Hopkins ED as directed by another doctor
  • Spend a month diuresing down to my dry weight
  • Deal with bad pain from my pannus
  • Get to dry waight, get discharged with plan
  • Do the plan by the letter
  • Notice that the swelling is back
  • Seven GOTO One. (in less geek terms, rinse and repeat.)

I’ve been in the hospital more often than I’ve been home in the last six months.

Things are moving quickly, but not in a way I would have chose.

Today I learned that my congestive heart failure now includes both sides of my heart (whereas before I had been diagnosed as having right-sided heart failure). This obviously affects my prognosis, and not in a good way.

I’ve gone ahead and canceled gigs through the end of the summer. Not only does travel become much more complicated when you’re terminally ill, but I can’t guarantee I’ll be out of the hospital, much less felling well enough. And that’s not fair to organizers.So if you’ve been hoping to catch up with me at Beltane, FSG or some other event I am usually at, you should start thinking about an alternate plan.

Tonight they are moving me to a different part of the hospital. I joke with my nurses that I’m trying to win “Hopkins Bingo”, where a patient must have a stay of longer than 24 in a building in order for it to count. When you’ve stayed in all of the different buildings, you win. I got a difficult square this time; Bloomburg is 95% pediatrics, but one floor is the cardiac ICU stepdown, which is where I was. That’s not easy to get at all unless you’ve been playing this game far too long.

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Reality Bites

March 1, 2015 at 2:40 pm (Congestive Heart Failure, Death and Dying, Hospitalizations, Medical, The Journey Towards Diagnosis) (, , , , , )

This entry will be short and to the point. I know, so unlike me. Well, here it goes.

stoneandballoon

Today is my Mom’s birthday.

Yesterday, I met with a Hospice/Palliative Care nurse.

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Close Call

November 25, 2014 at 3:09 pm (Congestive Heart Failure, Death and Dying, Hospitalizations, Medical) (, , , , , , , , , , , , , , , , , , , , , , , , , )

Everyone in the room – the doctors, nurses, Rave, and even me – all thought the same thing, but no one wanted to say it.

For me, it became tangible when I realized I was having visual hallucinations and disturbances and couldn’t hear out of one ear. My blood pressure numbers were getting lower and lower and no one knew why. My chest hurt like crazy and I was struggling to breathe both out of pain as well as panic. The doc even asked me what my advanced directives were – like did I want a breathing tube – which they had never done before. That’s when I knew I might actually die, like, right now.

I’ve written a lot about how I hate asking people for rides, that it feels like panhandling. Even when people assure me that I can always ask and they like doing it, I still feel terrible about the whole process. After I left the hospital in October, my team had set me up with a slew of follow-up appointments; the idea was I was not well enough to go back home and return to normal life, but I wasn’t urgently sick enough to warrant staying in the hospital anymore. In particular, Johns Hopkins runs a “Heart Failure Bridge Clinic”, the “Bridge” being between hospitalization and home. You’re able to access services that regular doctors or cardiologist offices don’t offer, like IV diuretics.

I was able to attend my first Bridge appointment, and it was pretty standard. Other than a small med adjustment, it didn’t seem like a big deal. So when I wasn’t able to find a ride to the second appointment, I didn’t really stress over it. But then I missed a PCP appointment as well. It was a combination of people legitimately unable to make it and me not being in an emotional state conducive to putting as much effort in as I should have. Both Rave and I have been swamped with a preponderance of to-do items that are all “very important” and time sensitive as well.

I don’t remember when we first noticed that my blood pressures were off. I know I had started feeling dizzy and intoxicated without any cause. But however we got there, I started getting these ridiculously and somewhat unbelievably low readings with an average around 90/60. My home nurse told me to keep a close eye on it; well, that’s not exactly true, as she first recommended I go to the ER. When I told her I was feeling fairly okay and really didn’t want to go back to the hospital (can you blame me after a series of two-to-three week stays in the last four months?), she told me to keep an eye on it until I saw her later that week.

I decided to ask Dr. Google if there was some easy things I could do to bring my blood pressure up. This is when I was introduced into my current medical dilemma: as a congestive heart failure patient, I should severely restrict my fluid intake; but the one reliable way to raise and maintain a good blood pressure is to drink a healthy amount of fluids. So over the next few days I drank more fluids that I was “supposed” to and as it were, the more I drank the better I felt and the better my numbers were.

Well, not all my numbers. People with CHF have to weigh themselves every day because even small gains may be a sign of fluid retention and could require a change in your diuretic dosing. Every day I “cheated” on my restriction, the next morning would see the resultant weight gain; usually only a pound or two, but by the end of the week I was up over 10lbs. My nurse was pretty unhappy but we all agreed that since I had a Bridge Clinic appointment that Wednesday, I would just wait and see what they had to say.

Except that no one I asked could take me to Baltimore that day. By Tuesday midnight, I sent the message to cancel my appointment. I don’t know what my plan was, but until they invent transporters I didn’t have a choice. I couldn’t even decide to drive myself, because Rave’s truck is still too broken to pass inspection and she needs my car to get to work. I didn’t sleep well that night. If I called an ambulance, they would have taken me to Hillbilly Hospital, and that was NOT going to happen. I felt defeated and depressed.

Even though Rave has been in hot water at work over how much time she takes off (mostly to take care of me), on the off chance the PTO gods would smile upon her, she submitted a request before she left work on Tuesday to see if they would let her take me to the appointment. We were pretty convinced the answer would be no, but I didn’t have a lot of other options. We were both surprised that when she got to work Wednesday morning, she saw that her request had been approved. She hopped right back into her car and came back to Hagerstown to pick me up.

We made a mad dash to Baltimore as we were cutting it pretty close, and the Clinic is one of those draconian offices that refuses to see you if you’re more than 10-15 minutes late. We even called ahead to see if that would help, but no dice. On top of that, I had only been to the location once before, and it’s hiding in one of the regular towers (instead of in the Outpatient Center) and I didn’t know which parking garage we should use. To make matters worse, there was practically no available parking in the one we chose, so we spent another ten minutes driving around in circles. We breezed into the office exactly 15 minutes late.

The nurse practitioner took my vitals and saw both the weight gain and low pressure – 80/40. She left the office to call her supervisor. Rave and I figured it was to figure out how much IV meds to give me…until more than 20 minutes go by and she still hasn’t returned. Finally, I gave voice to what we were both starting to fear – that they were going to admit me on the spot. Which is sort of what happened. There weren’t any free beds in the unit I would stay in, and after taking my blood pressure a number of times and getting consistently low numbers she felt the best course of action was to send me to the ER so I could be monitored while waiting for a bed. I am very glad to this day that this is what happened, as if I had not been in the ER when things went south I don’t know what would have happened.

Now, it’s good to know that even though my blood pressure numbers were ridiculously low (normal/average blood pressure should be somewhere around 120/80), I was upright, alert, oriented. I felt a little dizzy, a little fuzzy, and I was struggling more than usual with my aphasia, but overall I felt okay. I was more upset at the prospect of yet another long stay at the hospital forcing me to miss something I was really looking forward to (Thanksgiving with some of my most beloved tribe of the heart) and more medical complications and/or restrictions. But then things starting getting worse.

The first thing that clued me in as to how serious things were getting was when they moved me into the ERs version of an ICU bed. I was wired and constantly monitored. They took my blood pressure in just about every way conceivable – while I was in different positions, on different parts of my arms, and with different sphygmomanometers. My numbers were getting even lower – 80/30. 75/45. 60/40.

All of a sudden one of my ears went silent. It both felt and sounded like someone had slapped a thick earmuff on one side of my head. And of course, doctors and nurses and other hospital personnel are asking me a thousand and one questions and now I couldn’t hear them clearly. I was also getting more confused and finding it harder to understand everything that was happening. At one point, someone offered papers for Rave to sign because I was acting so erratically. (Yes, it’s legal, as she is my designated medical proxy.) I do remember someone asking me to state what was in my advanced directives, mostly about whether or not I had a DNR.

That was the first time I really and truly thought to myself, “This could kill me. They’re doing this because it’s possible this could actually happen.”

That was also when I noticed the visual distortion. I saw fireworks everywhere. Lots of red and off-white lights danced everywhere I looked. After images were causing trails if I moved too quickly (or if the thing I looked at moved quickly too).The light was getting brighter, to the point where I couldn’t really see anything else around me. My sense of chronological/linear time goes fuzzy at this point, so I have no idea in what sequence things actually progressed.

I do remember starting telling people, “I’m really scared. I am really, really scared.” Somehow, my reasoning said that if I refused to lay down I wouldn’t pass out or die. I started breathing more deliberately, again thinking that if I just kept willing each breath I wouldn’t stop breathing. The lowest recorded blood pressure was 40/30, although doctors are skeptical that it actually got that low since, in fact, I didn’t pass out.

That was just about a week ago. I eventually made my way into the critical care unit (which they call “stepdown”, as it is a transition between ICU and a medical floor) where we found out what the hell was going on. It seems there were three forces at play, and all of them were playing to win – which in this case means “messing with Del”.

  • CHF/Edema – In order to avoid retaining fluid which makes my poor heart and lungs work harder, I have to stay under a certain amount of fluid intake a day. I also take “water pills”, aka pills that make your body absorb less fluid and just pee it out instead. However, if I flush out too much fluid it puts a strain on my kidneys, which are already starting to show signs of damage from all this stress. It also leads to…
  • Dehydration – I am only supposed to ingest between 1.5 and 2 liters of fluid a day, and that’s not just what I drink. It includes any substance that becomes a liquid by the time it gets to your stomach, like jello, ice cream, pudding, salad dressing, sauce, etc. But as we all know, bodies need a certain amount of fluid to regulate themselves. I’ve always had low blood pressure, and 9 times out of 10 that’s considered a good thing. But when I was feeling dizzy and ill and I was pretty sure it was due to how low it had gotten, Dr. Google said the best bet to raise it was to drink more fluid, so I did. And even though I had increased my intake to almost 4 liters a day, I was still dehydrated because…
  • Infection – My pannus (the hanging part of my belly, the part that the 2012 surgery was about) is super swollen, which I assumed was part of the water retention caused by the CHF. Turns out that was only half of the story. My pannus is, once again, riddled with infected tissue. There isn’t a collection, like an abscess, that can be drained or removed. It is diffuse through the tissues. So my body was using every bit of fluid to make white blood cells and other infection-fighting stuff, which leads us back to dehydration. The lack of available fluids meant that the infection could proliferate faster and more efficiently. It didn’t help that I had to skip taking some of my meds for a month due to some health insurance stuff, and some of them were my maintenence antibiotics. (Bad Del.)

Yesterday I was transferred out of the critical care unit back to a medical floor I have been to before, which is nice because I know and like most of the nurses here. It also means less wires and other restrictions. The infection is pretty bad and causing a great deal of pain – the doctors keep telling me it’s the kind of healing that gets worse before it gets better. I’m on the good drugs for now – vancomycin (antibiotic version of a nuclear bomb) and dilaudid (painkiller version of a nuclear bomb). I’m in a lot of pain, but in a weird way it’s a familiar kind of pain, which makes it a little easier to deal with.

Most people with CHF really struggle with knowing how much fluid they can safely have without causing problems. Unfortunately, for me it looks like the line between too little and too much is very fine, and I’ve been warned that not only will it take some time and experimentation to figure out exactly where that line is and that there will be a lot of fuckups along the way. Fuckups mean more hospital stays.

My primary care doctor has even mentioned that I could go live in a skilled nursing facility – basically, a special floor in a nursing home that’s reserved for people of all ages who are too medically complicated to live at home but not sick enough to stay in the hospital. The idea is abhorrent to me, but if my lack of transportation is putting my life at risk I can’t fully dismiss the idea. Rave and I have started preliminary browsing to see if moving to Baltimore is even possible. However much we hate living in Hagerstown, the place we have is a godsend of accessibility; Baltimore is full of three-story row houses which will very likely not work for us. But I can’t even think about moving with a full heart until I deal with the divorce settlement, because Mike is claiming I have a part-time job with which I can support myself and therefore he should not have to pay spousal support or cover my prescriptions like he’s been doing since we split. I can’t afford a lawyer and few lawyers do family law pro-bono unless there are custody issues. It’s a big morass I cannot deal with without getting chest pain – and I’m not saying that to be melodramatic, I’m saying it because it really does cause me that much stress.

That’s the story of my close call. The reality and tangibility of the end of my journey is coalescing, and it’s a lot more terrifying than I was prepared for. One of my doctors admitted to me that if he were in my shoes, he’d be freaking out a lot more than I am. He even offered to send me a social worker to talk to, which is probably not a bad idea.

If you wanted to send flowers or the like, you can email Rave at delandrave at gmail dot com and she’ll give you the information. It would be greatly appreciated. I’m feeling kind of lonely and sad these days.

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Congestive Heart Failure And Me

August 27, 2014 at 11:22 am (Congestive Heart Failure, Hospitalizations, Living With Chronic Illness, Medical, The Journey Towards Diagnosis) (, , , , , , , , , , , , , , )

I have been diagnosed with stage 3, right sided congestive heart failure. Let’s break that down so you understand what that means. Keep in mind, I’m not a doctor and this is by no means meant to be a completely scientific lesson on heart disease. I am sharing the information I feel will help my friends and family understand how this diagnosis affects me and what it means. Feel free to ask your doctor for more information.

I’m going to start with the “congestive heart failure” part. Your heart is a wickedly smart little organ. It knows exactly how much blood each of your organs needs to operate at their maximum. When one or more of the organs needs more blood, the heart is able to increase how fast it beats, pushing blood faster where it’s needed.

The first symptom I had was that my heart was beating pretty fast – upwards of 120bpm. Obviously, that can be caused by a lot of less serious reasons, so although it was something my doctor was aware of, it didn’t cause any alarm all by itself.

Meanwhile, my right ventricle, the one in charge of getting the right amount of blood to my lungs, thought something was up. It wasn’t getting as much fluid back as it was sending out, which is cause for concern when you’re a right ventricle. It assume that there has been some trauma or injury to the lungs wherein there is blood loss, so it wants to pump harder to make sure the wound doesn’t drain the blood the lungs still need to function.

But in my case, it was not a wound that was causing the lack of fluid return. My body was soaking it up, in the form of edema. That’s the reason my feet and ankles, and then eventually my abdomen, got really swollen. The reason my heart thoughts my lungs were in trouble is because my lungs were really struggling with keeping my oxygen levels high enough to function. The struggle was primarily caused by my sleep apnea – I was using a CPAP setting from 2005, and a lot has changed since then. I need a BiPAP in order to get the right amount of oxygen at night, and the more oxygen and the less carbon dioxide in my system, the less the demand on the right ventricle.

CPAP? BiPAP? Is this like a Pap smear?
No, thank goodness. Continuous Positive Airway Pressure is one way to make sure someone’s airway is open and functioning while they are asleep. If you’ve ever shared a bed with someone who snored terribly, that snore was likely caused because it was the only way to get the passages open enough to maintain enough oxygen. With a CPAP, it gently blows air into your nose (and mouth if necessary) to help keep the airway open.

With CPAP, there’s one number: the amount of air pressure the person needs to keep their passage open all night. However, if the person needs a very high amount of pressure, it becomes difficult to exhale without feeling like you have to use your exhale to push against it. What makes sense is to have two pressure settings: the higher one when you breathe in, and the lower one for when you breathe out. Thus: BiPAP. Bilevel positive airway pressure. BiPAP comes with a second usage, which is that it can also stand in as an external ventilator should someone have significant trouble breathing night *or* day.

I knew I needed a BiPAP for a few months, but I was dealing with a lot of doctor office monkeyshines and did not get it. But I will have one when I get home, as the hospital has taken care of that.

The Right Side of Heart Failure

Like I’ve said earlier, the right ventricle is specifically tasked with keeping the lungs happy. Because I was having severe O2 deprivation due to the apnea, my poor little right ventricle did all it could do. Now it is damaged from being overclocked for so long. Part of the reason it took so long to figure out what was going on is that the symptoms of heart failure are easily attributed to being fat, even if you aren’t really fat to begin with. CHF makes you feel tired all the time, it robs you of your stamina, you lose your breath even when you aren’t doing anything, and then the swelling comes. The edema is made worse when it gets to the abdomen, because then it is putting extra undue pressure on the diaphragm and lungs, making it even more difficult to breathe.

Although I am still a little angry about it, I have come to accept that even though I was clear with many doctors about these symptoms as soon as I noticed them, many of them dismissed me and told me it was because I was fat and I should reconsider weight loss surgery. (In case you weren’t a reader when I wrote my many rants on WLS, look at the tags on the side of this page for more info). I mean, my weight is a contributing factor (but not the only factor!) to my apnea, so in a way it is also a factor in my heart failure. But lots of people get CHF, and getting it at my age is getting more and more common.

What does this mean? Are you going to have to stop traveling/teaching?

Well, Del is going to have to get used to a daily regimen. Not only am I increasing the amount of prescriptions I need, but there are other changes I need to track carefully. I will have to weigh myself every single day (whee!) and do it in kilograms because metric! If I gain even a little bit of weight, I have to call my doctors ASAP to see if it’s related.

I am also going to have to learn how to live with strict fluid intake rules. I am only allowed to have 2000mg a day of any kind of fluid – that’s 2 liters. I have a plan on how to measure this, so hopefully that will work. I’m just from a world where drinking fluids was a good thing, and there was no such thing as too much water.

The reason I have to restrict my fluid intake is because should my body have extra fluid, it is likely going to shunt it into edema, because the right ventricle will be all like, “Hey feet, I got some extra fluid here, so I’m a hook you up!” and my feet will be like, “No, dude, we’re already super full! I’m sure your fluid is tasty but I can’t even imagine another…oh. Thanks.”

The last part I’ll tackle is the Stage 3. There are 4 stages, with 1 being asymptomatic and 4 being severely damaged and in need of interventions like surgical implants, surgery, or transplant if the patient is young enough to recover. 3 means that I have significant symptoms, but we’re hoping that with a minimum of intervention I should be okay for a while. But I’m going to give it to you straight – this is not a thing you take a pill, you stop eating salt, and everything gets better. This will degenerate and become more bothersome as time moves on. At some point, I plan on writing about how this diagnosis takes some of the vagueness out of “Del is sick”. The monster in the closet (or at least one of them) has a name, a face, a sense of reality.

Please feel free to ask questions in the comments below. Just please don’t break my rule of offering treatment options unless you are a professional. I don’t want to know what your Uncle Tommy did to recover from CHF, nor do I want to read that article you saw on how CHF is a made-up disease to sell cardio meds. But at the same time, I want to make sure everyone has a clear understanding of what’s going on with me and how it affects things moving forward.

*BONUS ROUND*

My blood sugar numbers were also wacky out on control when I got here, and I had a great endocrinologist who helped get me back to a normal-ish level. When talking about follow-up and finding the endo, I took a chance and mentioned that I was hoping to find an endo who would manage my diabetes *and* administer T. Without hesitation, he made me a recommendation to a Hopkins endo who does T for lots of different people. Even got me the number of the pysch I need to see for clearance before we can talk about T. He keeps reminding me that this is a maybe, not a yes, because I am so complicated; but he also said it may come down to an informed consent situation, where we go over the pros and the cons and then I choose what I think is best.

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Darling, Can’t You Hear Me SOS?

August 12, 2014 at 12:42 am (Hospitalizations, Medical, The Journey Towards Diagnosis) (, , , , , )

It’s now been officially a week since I have been admitted to Johns Hopkins. Although Rave and I both had tingly spidey-senses that a hospital trip was close at hand, we had no idea what we were in for.

I have been slow in telling people why I’ve been admitted, primarily because I’m still wrapping my brain around it and the effects it will have on my life going forward.

I have congestive heart failure. Specifically, right sided congestive heart failure, which is the rarer of the two. The doctors believe it was caused by my obstructive and central sleep apneas – a long story about which I am saving for another time.

I am requesting as strongly and seriously as I can that you do not ask questions or offer information (especially anecdotal or third-party info) about the causes, treatments, lifestyle adjustments, etc. THIS REQUEST PERTAINS TO THE INTERNET EVEN MORE SO THAN IN MEAT SPACE. One of the reasons I’ve been hesitant to post about this is because I am really not in a space to hear suggestions from everyone as to what to do next.

My second impetus for this post is more practical. In a perfect world, Rave would be here with me 24/7 until I was discharged. In the past, she’s done her best to attempt it but graciously accepted when she needed other people to step in. This time, things are much more challenging for us both as a unit and as two separate people.

What would be of help is people who could come and spend an entire evening with me (Ernie and Cookie Monsters may be warded against if necessary.). Throwing us a tank of gas (there are better turns of phrase, I’m sure) or helping us obtain parking passes. Specifically making plans to pick Rave up and take her to do de-stressful things. Rave may have some other ideas, and you may come up with ways to help that we didn’t think of.

I’m only going to add this next bit because I feel it’s necessary no matter how many times people have said it is not: Thank you from the bottom of my heart. We both loathe asking for assistance, especially with how generous our tribe has been for us, and we would NOT be asking if we saw many other alternatives.

Here’s the thing – I may be in here for another full week. In fact, that’s on the low end of the spectrum. It’s one of those visits where there is a goal to be met that can’t really be influenced by willpower or any kind of effort.

If you feel you want to help, contact us using our shared email address – delandrave @ gmail . com.

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The Magic Number

August 8, 2014 at 2:26 pm (Death and Dying, Hospitalizations, Medical, Mental Health, The Journey Towards Diagnosis) (, , , , , , , , , , , , , , , , , , , , , , , )

Hey there, dear readers. Before I begin, I want to apologize. When I started this blog, one of the main reasons was so I could share information about my health in a timely manner from a centralized location – so I didn’t have to post to every single social medium and then answer comments from them as well – but this time I didn’t feel ready to blog about coming to Johns Hopkins ER or why I came in. I’m still not ready to write about all of it. But here is a little information, a little navel gazing, and a little update. -Del

A while ago, back in March, I started taking on some serious edemitous weight (what we non-medical types call “water weight”, “edema”, or “swelling”) – one doctor guestimated I had gained 50-70lbs of swelling (and he was pretty close to exactly right). I began seeing a long and complicated list of specialists, each of whom happily pointed to one another as the doctor who could help me tackle this once and for all. I was bounced from cardiologist to infectious disease to primary care to nephrology and around again. I got put on several different combinations of drugs, kept on using the pneumatics when I could, tried to limit my fluid intake, etc, etc, etc.

I will admit, I was feeling pretty defeated. Not only did each doctor think it was definitely a SEP (Someone Else’s Problem), but none of them treated it like a big deal. When I had to buy new shoes 3 sizes larger, I barely got a shrug. To me, my Non-Violet Beauregard impression felt like something pretty hazardous but even when doctors was using scary words like “organ failure” and “amputation” they did it with a resignation usually used about troublesome boys.

After all, the list of symptoms I had –

  • Extreme Fatigue
  • Shortness of Breath
  • Apparent Weight Gain (Swelling)
  • Lack of Appetite/Nausea
  • Sleep Disturbance

– could all (and were) attributed to being obese/sedentary. When I showed my primary doc that I was losing my breath just from standing up and buttoning my pants, we had a ten minute conversation/debate; she was forceful with her opinion that I was decompensating. (Basically, the opposite of ‘getting in shape’.) I kept arguing that even if I was truly decompensating, I was pretty sure it wouldn’t happen that fast and that dramatically.

But all along, everything that popped up she immediately tried to relate to my weight. In fact, when I came back to her after getting the diagnosis “Volume Overload” (Totally my Del Tashlin cover band), she weighed me to confirm that I’ve had a radical weight change – 60ish pounds in 3 months.

But to me, that wasn’t the shock. It was the magic number. I think we all have one. It may not be the same statistic, but there’s a number somewhere in your life that fits the category.

  • “If I ever have to buy my pants at Lane Bryant, just shoot me.” (number implied)
  • The day my scale says 300lbs is the day I lose my shit.”
  • “When I can no longer buy clothes at the mall because I am too big/short/tall/etc, I will have to kill myself.”
  • My cousin’s bra size is a 44G. I’d rob a bank to get a reduction before I would live like that.

There I am, standing on the scale looking at the highest weight I’ve ever been. I’m not seeing the magic number, but I’m very close to it. I take a deep breath and start reminding myself that it is edematous weight, swelling, something that will go away once they figure out what is causing it. Maybe a few tears roll down the side of my face, because it’s a number I wasn’t ready for that day.

As we go back into the exam room, my doc makes a comment about possibly revisiting the weight loss surgery conversation. Anyone who has followed my story from the beginning can probably guess how that conversation went. She’s trying to assure me that just because I had ONE bad experience with ONE doctor should not mean I reject the possibility forever. I am trying to clarify to her that this weight is not “Del ate some extra cheetos and skipped aqua aerobics” weight, but “something is physically wrong with Del that is causing water retention at a ridiculous level”.

I left the appointment feeling pretty sure that my GP wasn’t going to be any further help in this situation. Once again, I’m thinking I might have to go looking for someone new – especially in light of what has happened. In the most obvious application of the metaphor, I came to her with a list of symptoms of a serious medical problem of immediate need of treatment, and what she saw was a fat, lazy person who wasn’t taking care of themselves.

I got so disheartened, I stopped giving a shit. I still took my meds and the like, but I stopped making doctor’s appointments. I lost my fire. Inside I knew that something serious was going on, but it was as if I ran around the village telling everyone the Monsters are Coming and the village reacted with affected apathy. It wasn’t until Rave and I noticed that the swelling was getting markedly worse, and now was happening faster than before, that we decided something had to be done.

Now I am inpatient at Johns Hopkins and I know for certain what all my symptoms were caused by and what the short term plans are to get me going home, at the very least. As I discussed things with Winter last night, he asked me what he and the Clan could do to support me in this time, and I paraphrase for you, dear reader, as well:

I feel like I need some time to wander in the dark, bump into the walls, wack my toe on the moulding. I need permission to let this filter in slowly, rather than jump to branding it on social media for the 140 characters times worth of edification faded into the next cute cat meme. I don’t want to have to educate each and every person I talk to about what it is, how I got it, and how we’re treating it. I just want to sit with this for a while, think about it, run my fingers around the edges and see if there’s a contingency envelope hidden somewhere.

When I’m ready, I will share everything on the blog and you will all know what’s going on. Until then, for now, it’s just mine to feel in all the ways I want to feel it.

(And the good news is, I’ve already lost 15 lbs away from the magic number, so that’s reassuring.)

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Contemplation and Dedication

December 30, 2013 at 2:18 am (Chronic Pain, Living, Living With Chronic Illness, Mental Health, Spiritual, The Panniculectomy, Uncategorized) (, , , , , , , , , , , , , , , , , , , , , , )

Today will be a year and a day since my ordeal. It has been a very difficult, draining, painful year. I have suffered so many different kinds of loss that I don’t know if I can cleanly separate one from another. They have come at me from every direction, from places I would have never suspected, and in ways that only made any sort of sense in retrospect. I spent a lot of time mourning. This should have surprised me a lot less than it did, having struck a complex and winding deal with Death herself, but I’m still a Fool who bumbles forward ignoring all the big “Dead End” signs along the way.

And then, a few days ago, a very small light was lit. I spoke to Hel directly, and the best way to describe what happened would be that I got my “annual review”. We spoke about times when I truly contemplated in the way She had asked, and times when I did everything I could to avoid said contemplation. She showed me in that transpersonal yet compassionate way how each distraction from my Purpose had been removed. It sometimes felt like a student of meditation getting wacked on the knuckles every time they were obviously not focusing. But I learn the best lessons through pain, both emotional and physical, so it’s not like She was speaking a foreign language.

After we went through the Year of Contemplation, I asked if my failures and misdeeds meant that I had to Contemplate for another year again. “Oh no”, She replies with a slightly amused grin, “It’s not like when a new lesson begins, the old ones end. It just means you are building upon the foundation, and contemplation was the first layer.” Oh yippie skippy.

The next theme came to me slowly. I saw some opportunities start to swirl and manifest around me, and having learned some of my lesson, I wondered if this was a test to see if I would give in to another diversion. As quickly as I could, I went back to Her and asked for clarification. I’ve made enough terrible mistakes already; I was willing to risk being told to figure it out on my own if it meant She might share more insight.

That’s when 2014’s theme was given to me, much in the same way that 2013 was the Year of Contemplation. This year is to be the Year of Dedication. I will still spend much time, likely even more than last year, in spiritual contemplation, but I will also be taking on the responsibilities of sorting out what people/places/things fall within my calling, and which ones only serve as distractions or hidey-holes where I can run away from the difficulties of my station. Some of the plans I have for 2014 have already shown how they are part of my Dedication, and other plans have already been deemed unfit.

I am still sorting out one aspect of Dedication, and I think my confusion is because I really want Her to give me a straight answer, and She wants me to find the right answer on my own. When I first was in preparation for the ordeal, I knew that She wanted some form of oath or promise that would bind me to Her. I had first toyed with the idea of becoming Her consort or spouse, and honestly the reason I didn’t explore that further was because I listened to someone I shouldn’t have who had big stakes in the outcome of that decision. But now I am unfettered (for the most part) and the question lays on the table again. For now, I am offering her my celibacy, which is going to be a very big challenge for me. For I am not only forgoing sexual contact as part of this experiment, but I am also consciously not looking or even really fantasizing about finding a new lover. (Right now, I have a mostly non-sexual relationship with Rave, and a few romantic relationships that are not only long distance, but that I rarely ever see; so the temptation has been present to try to find a new dating situation of some sort.) What I understand as the long term goal of this experiment has less to do with establishing a sexual or romantic relationship with Hel, and more about accepting the reality of my life at 40 years old.

I have tried, more than a few times, to establish a “family”. In some cases, I married or created a partnership with a person whom I felt was able and willing to establish a family unit with, only to have the relationships fall apart and with that, a complete cut-off from their life. Other than that, I have tried starting covens, communal families of choice, and other group dynamics that focused on a long-term familial devotion to one another, but most of them (really, save one) have all eventually given in to entropy. I know this yearning for family is partially due to the instability of my childhood; and that has become even more of an issue with my mother’s passing early in December. I have never met my father’s extended family, and my maternal one has become estranged from me over time. The feeling is even stronger and sadder now that both of my parents are dead; even my brother voiced his concern to me that without my mother, we may all lose touch with each other.

I also have always wanted children. I had the opportunity once when I was much younger, but I opted out thinking that I would someday reach a more stable relationship in which to bring offspring. I have tried, both in the unofficial “hey, let’s just stop using protection” path, as well as with a more formal “let’s track my ovulation and basal body temperature and have sex when things look ripe for it”, and other than a few miscarriages it just never happened. Now I am having unmistakable signs of perimenopause, and I don’t have a fertile partner of the right biological sex in order to give it one last try. And even if I did, my life is just not conducive to the responsibilities inherent in having a child, which is why adoption is not an alternative. My best hopes is to try to remain an active part of my godson’s lives, and accept my childless lot.

It’s a lot to give up. When other people were dreaming of stellar careers and fancy trips, I’ve always had a far simpler vision of what I thought my life would be like. I just wanted a stable family life wherein all of the people involved had made a lifelong commitment to love and respect each other, and work collaboratively in raising some kick-ass children. I never really cared about what I would be doing or how much money we had, just that there were both adults and children in my life and that we had a loving, fun-filled home.

Then again, when I surrendered, first to Loki and later to Hel, I never asked for the family package. In fact, I consider myself lucky that I have been able to have the relationships I have experienced in the last fifteen years, and I have fond memories of all of them, even the ones that ended on bad terms. I know plenty of spirit workers who have been denied the opportunity to have mortal lovers at all, so I know they were a blessing. And there’s nothing written in stone that I won’t be able to have them in the future (yet); it’s just that I need to take this time to dedicate myself to the reality I am in, have been given, and to stop pining and/or trying to create a reality that is not mine to have. So the celibacy is less about not having sex (I am still allowed to masturbate, thank you Hel), and more about letting those dreams slowly rot on Her altar. If I were to take time to find and pursue a new lover, it would very much distract me from that process, and rekindle my hope.

And She has said that this is not forever, and that any changes to that I will have some say in. If Mx. Perfect-for-Del shows up, then part of that perfectness will have to be the understanding that sex is not on the table right away – not that it was with lovers in my past, either – and that my calling as Her shaman-and-sometimes-consort takes a huge precedence over any mortal, any day. It means that the tasks and responsibilities I take on this year as I begin to hone-in on what I am dedicating myself to are very much more important in terms of time, energy, focus, and availability. I will have to be very clear and unrelenting in my communication about what I am able to share with a lover, and if they can’t accept that, it’s better we know that up front, than spend a long time both hoping that things will somehow change.

I know that this year of dedication will be a lot of work. Not only personal work in the same way contemplation was, but also actual “must be awake, alert, and able to engage” types of work. My pain has been bad enough for the last two months that my doctor is very concerned, and I am also showing some early signs that I may have a new abscess. But part of what She wants from me is to find the balance between making time to do the things that allow me to be as functional as possible – like going to doctor’s appointments, seeking out therapies, eating well and getting what exercise I can tolerate, etc – but at the same time, not falling into another dark hole of counterproductive nothingness just because I feel shitty. I don’t know where that balance is quite yet, but I will sure be trying to find it.

I have so many other things to write about – obviously, my mother’s death being one of them – and honesty, I’ve started six or seven different entries and I eventually realize that I’m just not ready to share so openly yet. Another sad consequence of 2013 is that I had to learn to be much more circumspect about what I share online, as I have found more than once, someone using my words, my experiences, my life, etc as a way to attack, belittle, hurt, shame, or punish me. Some of the entries that I have deleted were purely emotional responses to such things, and I know that sort of pettiness does nothing but make me look like a jerk – I know this, because the people who did these things sure looked like jerks when they did it first. Instead, I am taking some time to note important thoughts, feelings, and insights, and when I am able to write from a less tumultuous perspective, I will get back into the swing of things.

But for now…

Hail Hel, Lady of Mercy and Patience.

Hail Hel, Who is as Warm as She is Cold.

Hail Hel, Who Loves Silly Fools Who Take Too Long To Learn.

Hail Hel, Giver of Life and Death in Equal Measure.

Hail Hel, Entropic Transformation.

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I’m The Fridge

August 25, 2013 at 12:29 am (Chronic Pain, Hospitalizations, Medical, The Journey Towards Diagnosis) (, , , , , , , , , , , , )

…and the diagnoses are the spaghetti.

Still at Johns Hopkins, and it looks like this trip is going to end very unsatisfactory. After being absolutely certain that the problem lied in my kidneys, they have now ruled that out completely. I don’t really understand how, as some of my symptoms are unmistakeably kidney related, but the doctors assure me my kidneys are just fine, other than the small stone that is “in a place I shouldn’t be able to feel it”.

So today’s crazy noodle is some sort of lung issue combined with neuropathic pain. The chest x-ray they took showed that part of my right lung is not getting as much oxygen as it should. Of course, this could easily be explained by the fact that I’ve been having crippling flank pain for over a week now, forcing me to take shallow breaths, but of course that would be too easy.

From what the doctors said, it looks like their plan is to run a few more tests, let a few test results come back from the lab, but otherwise begin the transition towards discharge. They’ve already lowered my pain meds; normally I’d be cool with that, except around dinnertime I got another giant stabbing, burning pain in my flank and now nothing the nurses can give me helps at all. I spent most of the night sitting still in the chair, trying hard to find a position that doesn’t make me cry. Gah.

What really upsets me though, is that the doctors are already talking about how I should chase this problem down as an outpatient. However, and it’s not their fault, but I can barely keep up with all the doctor’s appointments I have now. Between not having a regular driver who can bring me from Hagerstown to Baltimore, not feeling well enough to leave the house, not having the money to fill any more prescriptions or other medical shite thrown in my direction, I don’t know what the hell I’m going to do to chase this down. They’re talking about attempting an MRI again, although this doc says she knows of a few machines that might accommodate me better than the one here. The intern stopped by this evening and asked me a bunch of questions that were dancing around the idea I might have MS: this is one of the most bandied about diagnoses I’ve heard since this all began, but the diagnostic criteria are either a) spinal or brain lesions on an MRI or b) ruling every other disease on the planet out first. I might actually be getting close to the latter, these days…

But I have to say, this hospital stay has been exceptionally hard on me. It’s a combination of factors: I’ve been alone more; every time I feel like I understand what’s happening with, and to, me the rules change; I’m in the “historic” building this time (if you think the 1970’s were “historic”) and the room isn’t as cheerfully appointed; I haven’t been able to eat or sleep like a normal human being in more than a week; oh, and let’s not forget Dr. Laing’s shenanigans. I can’t recall if I’ve ever secretly planned to sneak out of a hospital AMA before.

I also am feeling this crushing weight on my heart because, for so many years, loved ones were pressuring me hard to seek out Johns Hopkins in hopes they would be able to solve the greater Del mysteries. Now that I’m here and in the reality of it, people are constantly asking me why. Or why I haven’t moved on to somewhere else. Here’s the truth of it: it’s really not that easy for someone like me to up and move all of his health care around. I mean, I’ve been in Hagerstown for just about a year and I still have at least one doctor in Germantown I have yet to find a counterpart for. Getting my pain management shit transferred was a big deal (although, another benefit of having suffered through the wean is that if I don’t like what his next move is, I can likely find another pain management doctor fairly easily now), and now I have a huge amount of data here referring to my abscess adventures.

In fact, I debated going to the Hagerstown ER when the flank pain didn’t get better. I figured any hospital worth it’s weight should be able to heal a kidney infection, right? But the more I thought about it, the more complicated it got. We’d have to get all the office info for my JH doctors; they wouldn’t have any of the information about the abscesses; they would have to get all my CT results so they could compare now with before; and of course now that we know it isn’t a kidney infection but something more difficult, I’m glad I didn’t.

I have decided, however, that I am using the next few weeks as a time of omens. There are some big questions on my plate that I have been very slowly compiling data on, and depending on how this plays out some of those questions will be easier to answer. For example, if one of the doctors decides to go gung ho on finding MS or something like it, I would be more likely to invest and take the long route. And that’s all the hint you’re going to get.

But for now, I have to figure out how to sleep when my back and side on are fire.

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Square Pegs

August 23, 2013 at 1:26 pm (Hospitalizations, Medical, Mental Health) (, , , , , )

This is going to be difficult to write. I almost never use trigger headings (warning people about potential upsetting topics), but this post deserves one: Trigger Warning: discussion of sexual assault, abuse of power.

There is also an anatomical image of a vaginal opening further down.

I’ve posted to Facebook my frustration over the way doctors have been tossing potential diagnoses at me left and right. At various points in time, I’ve “had” a kidney infection, an abscess on the kidney, a blood borne infection, another abdominal abscess, kidney stone(s), a pelvic infection, etc, etc.

In the course of this, I am being seen by an intern, Dr. Laing. (I am guessing on the spelling. Please note that I rarely use doctors’ real names on this blog, but for him I am making an exception.) At the time, I do not know that this is only his second day on this rotation (although he’s done it once before). He is a charismatic young doctor who looks like he’d make an excellent background character in a college library or Revenge of the Nerds movie.

Dr. Laing stops in and begins to ask me some sexual history questions. As y’all know, this doesn’t phase me at all. He is vague at first, when I ask him how this could be related to my problem. Then he tells me I am getting a pelvic exam to rule out STIs, and other problems with my magina area.

As someone who has experienced real, documented trauma at the hands of a crappy gynecologist, as well as someone who has psychological issues with strangers mucking with his bits, I start to feel a little panicky. I take a deep breath and start trying to make the situation as comfortable and “safe” as I can.

I start by asking for a female doctor to do the exam. It’s not that I have issues with male GYNs, really. I find informing a female GYN of past trauma translates into a much more compassionate and gentle experience. Dr. Laing says he will look into it; a few minutes later he returns to say he couldn’t find one but that there will be two female nurses in the room. I am unhappy (especially since it felt like he only spent a minute looking for a female gynecologist before giving up) but shake my head and accept that the intern will do my exam.

It helps the story to remember at this time that my chief complaint is severe pain in and around the kidney area on my back and side. Dr. Laing informs me we’re going to do the exam in my room, and I am surprised. I ask why we aren’t going to an exam room with, y’know, stirrups and shit. He assures me it’s going to be quick so there’s no need. He is, in fact, surprised that I am surprised.

I should have known something was going awry when he asked a nurse to get all the necessary tools, and when she arrived with them she had to give him a rundown as to what was there. I had requested he use a pediatric speculum, since we weren’t doing a pap smear or anything requiring more than a glance at my cervix. This, too, he pretends to accommodate, by leaving the room for a minute and returning empty handed. I happen to know that JH has an extensive pediatric unit, and I would bet something large that it has at least one peds speculum.

Finally, I carefully lay down, yelping at the pain in my side. Keep in mind, I hadn’t slept in 3 days because laying down was uncomfortable no matter what position – and he knows this. He decides to use an upturned bedpan to raise my hips a little, which digs into the most painful area on my back.

People are probably wondering why I haven’t refused to continue at this point. Again, I mention that the doctor is very charming, and I am honestly afraid that if I really stand up for myself I will get substandard treatment. Also, it bears mentioning that I have been the victim of sexual assaults, one of them perpetrated by a doctor. So being in this situation has already flipped me out emotionally and so I focused on being physically compliant as I could.

I lay down with the bedpan digging into my lower back. We mess around with the positioning of my legs. I am making a constant stream of pain noises and am trying not to squirm. He informs me we’re going to start with the speculum. This is not the tack I would take with such an exam; those of you who have played with vaginas know that it’s better to start with something small and work your way up, rather than the opposite. I accept my fate with a sigh.

This is when things start going downhill fast. He parts my labia and immediately pushes the speculum against my urethra.

As you can see, that’s like aiming for Manhattan and ending up in Staten Island. They’re connected, but not the same thing. Because I am in a fair amount of pain already, I just flinch away and try to close my legs. He takes this as skittishness and tries to relax me. I am somewhat non-verbal, which is exacerbating the issue. He attempts again, and this time I feel him trying to open the speculum as it is resting painfully on top of my urethra.

I react again, and this time he decides that this isn’t working so he’s going to skip to the manual exam. He says his objective is to palpate my ovaries. I tell him that many GYNs have tried to palpate me in this matter and have been unsuccessful. (My ovaries happen to be hiding in an area of my body with a lot of fat tissue.) He asks me to give it/him a try, so I sigh and nod.

Unshockingly, he takes two fingers and presses them against my urethra. At this point, I say something like, “That’s my urethra you’re trying to penetrate.” He apologizes, withdraws his hand, and then returns to push painfully against my…clitoris. That’s right, this newly minted MD thinks the vaginal opening is above the urethra rather than below it.

Let’s just skip ahead. He fails to palpate my ovariesm (not for lack of trying!), and by the time he’s done I think he knows he’s fucked up. He leaves without saying anything to me, which was good since I was crying. Both nurses who were there were shaking and holding their tongues until he left. It was validating to see and hear that the nurses were as concerned and frustrated as I was. One nurse in particular, who was my assigned nurse, went to great lengths both immediately after, and for the rest of her shift, to comfort me. We sat and talked about our lives, she brought me super secret nurse treats, and she let Rave and I go for a walk for half an hour.

Later that evening, the attending (Dr. Laing’s bosses’ boss) and the resident (Dr. Laing’s boss) came in to hear my story. I stressed that this was not a “OMG gyno exams are hurty” complaint, but a “he really should have known the difference between an urethra and a vaginal vestibule” sort of complaint. It turns out that Dr. Laing assured his attending that he had done several pelvics before; the attending wanted Dr. Laing to have another doctor assist him, but Dr. Laing went rove and did it on his own. The attending assured me that I would not see Laing again, ever, and that the attending would take a special interest in my case.

He also gave me the lowdown on what’s been going on. As I’ve written before, it seems like possible diagnoses are spaghetti strands and I’m the fucking fridge. I might or might not have had or currently have:

  • a kidney infection, otherwise known as pyleonephritis
  • one or more kidney stones
  • an abscess on my kidney
  • a third reoccurance of an abdominal abscess
  • a peritoneal infection
  • an STI or other reproductive issue
  • ovarian cysts
  • any two of these in combination

The attending assured me that we were only looking in two directions now: we can actually see the kidney stone, but it’s resting on the bottom of my kidney where it should hurt the least. However, I’m not acting like a kidney stone patient. Second, there have been a ton of white blood cells in my urine, which screams “INFECTION”; the current thought was that I had an infection of the bladder.

This meant that right after I had come to peace with the pelvic-from-hell, I had to let yet another stranger muck about in my cuntal region (or is that “cuntle”?) and do something painful. I tried to advocate doing it the next morning, but the doctor really wanted the results tout suite. (heh.)

Anyway, back to the conversation with the attending about Dr. Laing. We agreed I would never have to see Dr. Laing or deal with him in the future, and I further pushed that if I saw him again, I would scream and shout. This ultimatum, in addition to a bevy of other complaints, served me well. I haggled over pain meds in my negotiation about the exam for my bladder and won. I decided to push my luck one final time, and asked him for a standing order for a little extra pain meds when I was particularly hurty. (Otherwise, the process is kinda long: I have to complain to a nurse, who then has to call the on-call service doc and explain the situation, and sometimes that doc has to call my actual doc to verify that whatever I’m asking for won’t mess anything up. This can take up to several hours.)

So a few hours later, three very kind but nervous nurses came in to do the straight catheter. See, when you pee in a cup, sometimes you leave behind skin, hair, or other contaminants in there too. Getting a urine sample straight from the source eliminates a lot of that cross contamination. I know I have friends who get cathed for fun, but I am not one of them. Maybe my urethra is too narrow, or I just don’t enjoy penetration in that way. I was shaking the whole time, but my awesomesauce nurse held my hand and told me funny stories fro her life to distract me.

So that was yesterday. Today’s song is in a different key, a different time signature, a different genre.

From what I understand, we have definitively identified the following diagnoses as being accurate and applicable:

  • one kidney stone, resting in the bottom of my kidney
  • an infection, somewhere in my abdomen
  • severe dehydration, and even IV fluids aren’t doing much to fix that
  • severe pain in my right flank, that is very sensitive to touch?

However, I have symptoms that are not explained by any of that. So now comes the oddball testing, starting with an echocardiogram this afternoon. I’ve been assured there were be no more pelvics, though.

I’m trying very hard to ignore the fact that three different phlebotomists have tried to take enough blood for a blood culture and failed. One couldn’t find any veins, so he walked away without playing Bingo! first. The second got a good vein, but it was pushing very slowly and meekly, so they only got enough for the little-bottle tests, not the catheter test (knowing the name would likely help).

I keep trying to explain to my doctors that my medical situation, whether it be short term or permanent (anything in between is more likely), is never black-and-white. Now he can order those wacky tests the hospital wants to try out. My nurse keeps telling me I’m scheduled for an echo (which I’m pretty sure is a heart test) this afternoon.

There has been some upsides: The nurse I had yesterday when all this went down, she and I bonded a lot. We sat and talked about my separation, and my relationship with Rave, and teaching adults about sexuality; she talked about some of her past struggles and what it’s like serving the homeless population in East Baltimore.

Um. There has to be more upsides. I have my own room? (in the dingey, “historic” building) Well, I do like my ID doc – who is actually the boss of the ID doc I am seeing at their clinic. I like the resident and attending of Dr. Laing, who are caring and considerate when touching me. I am pleased that they’re taking my pain seriously, and not dismissing it outright when their theories on what’s causing it don’t pan out.

People have been asking how long I’m going to be here. The only clue I’ve been given is that the attending would be happy if I wasn’t here when he gets back on Sunday. However, some of the tests they are doing today take two to three days to finish, so something tells me I will still be here Sunday. How much longer after that, I have no idea.

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