Our new normal

I leave notes to myself. I have an untidy stack or random bits of paper that live with my pen next to my keyboard.

This blog has always been about my health, but after all the adventures of the last year, I am completely uninterested in talking about my health in the way I have. One of my many notes is about ideas for changing the focus and things I’d rather be talking about.

Life in lockdown is not on my notes. I read something in passing on social media yesterday encouraging people to keep a journal about our experiences as we go through this crises. As I think so many have, I thought “why not, I don’t have anything better to do.”

That isn’t entirely true. Unlike so very many people, our lives haven’t been much disrupted by quarantine. We are both introverts. We both already have home offices. Our employment is stable. Beloved no longer goes out for lunches, and I’m not making my daily trip to the gym. On the surface, there’s really nothing to see. <cue maniacal laughter>

We were early adopters of social distancing. As things started to look bad in Italy and the news was just starting to be slightly alarmist, we decided Beloved would work from home for a while to avoid riding the metro to work every day. No sense getting that much exposure. The timing was good since Wednesday he was taking me to have a root canal. Always fun. I think that day will always be the turning point in my mind. The last day of old normal.

It all shifted really fast the next week. Monday was the day they closed the rec center for two weeks. I called my dentist and made an appointment for my post root canal permanent filling. By Wednesday, they had called me back. They had gone to emergency visits only. We hoped things were only temporary and we’d still be able to take our scheduled vacation at the end of the month.

I live in Virginia, but we live in what is locally referred to as the DMV, which is the place where DC, Virginia, and Maryland all converge. This means our local news station covers all 3. On March 3 when Maryland governor Hogan declared a state of emergency after a few cases of covid-19 in one church, there was definitely a feeling that it might have been a little excessive. On March 12 when he announced the closure of all Maryland schools for two weeks, it was a complete shock, and more importantly, that is when all the local dominoes started to fall. DC and Northern VA schools quickly started to follow. And then the panic started.

I usually do my grocery shopping on Thursdays. On Thursday the 12th it was shopping as usual and I picked up a few extra things. I remember it seemed unusually busy. I distinctly remember mentioning to a friend that people were insane and we did not need to shop for the Zombie Apocalypse. When I came back for a quick mid-week shop on Tuesday, I was shocked and horrified. I have never, ever seen grocery stores with so many empty shelves. I have never, ever seen the entire toilet paper section down to just a few rolls here and there. I know this is a not entirely foreign idea to those who live in areas prone to hurricanes. I managed to miss any big ones when I lived in Texas. I have never personally experienced it before.

Those empty shelves disturbed me at a very visceral level I didn’t expect, and I didn’t really understand. The panic was unexpected (to me) and unnecessary. The empty shelves caused the panic to escalate. In some ways, that first post panic trip to the store is what changed the face of the world forever for me. It was very much outside my admittedly privileged life. I’ve lived in a world where I didn’t have money for the groceries I wanted, where I mooched a few meals off friends so I could stretch my budget through a lean time. But I have never had to live in a world where there weren’t groceries to buy.

Honestly, I can’t really give any details about the next 2 weeks. Every day was a flood of bad news. Every day caused more discussion about politics than our house normally sees in a week, even in an election year. I was angry enough about government response to write an article about it. Every day we watched the numbers from Italy become more and more dire. Every day I ate comfort carbs and completely derailed my normal Weight Watchers lifestyle. Every day I felt paralyzed and a small corner of my brain kept asking me what the heck was going on.

A friend of mine posted this most excellent article that helped me make sense of what I was feeling. I had never heard of ‘anticipatory grief’ before, but that was exactly where I was.

Anticipatory grief is that feeling we get about what the future holds when we’re uncertain. Usually it centers on death… Anticipatory grief is also more broadly imagined futures. There is a storm coming. There’s something bad out there. With a virus, this kind of grief is so confusing for people. Our primitive mind knows something bad is happening, but you can’t see it. This breaks our sense of safety. We’re feeling that loss of safety.

That’s it. That’s where I was.

I’m pleased to say that Monday I finally started to get a grip. I figured out an alternate plan of exercise that I can do while I’m still building strength after years of disability. I’ve yanked myself back on to the proper eating habits.

And I’ve started writing a lot more, because that is how writers make sense of things. I don’t expect it will be smooth sailing. Most of my family is in the state of New York where things are currently completely out of control. I live in another major urban center. The real shock wave hasn’t even hit yet and the numbers are climbing every day. All we can do is ride the wave and do the best we can.

After the summer

It’s been a really long time since I posted.

I am so very, very tired of my health journey at this point.

I mentioned here that I finally found a surgeon who would do my knee replacements. And that is what I did with my summer vacation. And it’s mostly what I’ve been doing since then. It has been extremely successful, and also a long, tedious, uncomfortable process. So what I really want to talk about isn’t what I did, but what I’m doing.

I went to Target. And I walked. I’ve been on several short trips to pick up one or two things each time, but walking instead of using an ECV. This last trip I stood and contemplated several options of tote when they didn’t have what I really wanted. Just…standing.

I went to Disney World. That was a little too soon in my healing journey and I wound up with enormous blisters on my feet. I also had an amazing time. I had a scooter in each of the parks, but just getting too and from the parks had me doing more walking than I’d done in at least 5 years. It was fun and exciting. And I could.

 

I go to the gym. Before surgery I could just about do 10 minutes on the seated elliptical at zero resistance. Now I can do 25 minutes easily, 30 on good days, and I’m up to resistance of 9. When I get up to 15 or so, I plan to switch to the standing elliptical.

I don’t always park in the handicapped spaces. When I do, it has more to do with the distance between cars. My knees bend better than they have in a long time, but I still don’t fold up easily. More will come with time and practice.

I am making plans for some solo travel this year. It’s been a long time since I felt I could do that. It still feels a little scary but I have several more months of healing and gaining strength before I actually travel and I know it will be fine when it happens.

Things are feeling very positive. Getting new knees has been one of my best-ever decisions and I haven’t even finished breaking them in yet.

 

 

When success isn’t a habit

They say the habit of success creates more success.

What if you don’t have a habit of success?

My weight loss has currently stalled, and it’s messing with my head.

When I was in my early 20s, I did Optifast. Very unhealthy, but I didn’t know that then. I don’t have any records, but I’m pretty sure I lost around 100 lbs. I do know I ended up as a size 18, 2 sizes smaller than I wore at my HS graduation. Unfortunately, while Optifast was great for fast weight loss, they don’t teach you anything about dealing with any emotions that might affect your eating, nor do they actually teach you much about how you actually need to eat going forward. At least, that’s how it was in 1990.

In 2005 I went on the Atkins diet and I lost 100 lbs in 9 months. Unfortunately, I didn’t do it in a really healthy way. I didn’t know I was allergic to soy, which is in absolutely everything (salad dressing in particular) and it made me throw up a lot. I was intentionally eating low carb and unintentionally also really low calorie. I got down that 100 lbs and then I was stuck. I have journals from that period. I was not cheating. I was not over eating for my weight at the time. I was diligent, obsessive, and really, really frustrated.

In 2007 I developed another hernia and the surgeon told me that if I didn’t lose more weight they couldn’t fix it and I would die. So I stuck to low carb and got a little crazy with the calories and I lost another 20 lbs. I also lost my hair, my libido, my energy, my tolerance to cold, and my menstrual cycle went insane, but my TSH was still fine, so it couldn’t possible be a thyroid problem.

In 2011 I finally paid out of pocket for a Reverse T3 test and was not even slightly shocked to see that is was really, really out of range. So then I paid out of pocket to see an Integrative medicine specialist (the doctors who have an MD, but have also studied holistics, herbals, and non standard treatments.) He finally diagnosed my very low thyroid. He diagnosed my trashed adrenals (too many years of extreme dieting, another not-surprise). He diagnosed my trashed gut biome. That was kind of a new thing in 2011.

Then we moved unexpectedly and I lost access to my great new doctor. My weight ballooned with stress and bad eating. My hormones went insane. It was a nightmare. I tried several diets and got absolutely nowhere. Not even the 20 or so lbs I should have been able to count on just from water weight.

Utterly demoralizing.

So I studied more. I fixed my food sensitivities. I lived on homemade soup for about a year trying to solve nutritional deficiencies. I got my thyroid properly propped up. I sorted out my adrenal issues and support as necessary. I spent an entire summer focusing on fixing my gut biome.

I have high hopes that I have fixed the basic non-food issues that caused my problems in the first place.

But what if I didn’t?

My early Weight Watchers results have been good, but I’m now at a set point I’ve been to at least twice in the past. This is the weight I was when low carb stopped working. This is the weight I was when I first did Optifast.

I am absolutely panicked that this is the best I’ll get.

Intellectually I know that isn’t likely. I know that plateaus and stalls are normal. I know that my body is reshaping itself because my clothes are fitting differently. I know that I’m weighing and measuring and following the program. I know there is absolutely no reason that it should stop working right now.

But what if I’m wrong?

I tried telling myself that this new place is better, much better, than where I started. That isn’t helping in the slightest.

So I’m working out my panic in a blog. Because that’s what bloggers do.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Not your mother’s WW

Back at the beginning of October, Mike and I started Weight Watchers after his cardiologist complained about his weight again, even though all his tests were excellent. I had an epic meltdown dealing with my own issues, and then we settled down.

We both started losing right away. Mike lost nice and steadily, because men are horrible that way, and as a premenopausal woman, I lost in fits and starts, but my progress was acceptable, and I wasn’t really invested in it anyway. I was there for Mike, I was tracking for Mike, and my body, which had declined to pay attention to many diets in the past, would do whatever it was going to do.

We made it past things that were traps for a lot of people in our group. We avoid Halloween candy by ignoring the holiday. We were getting very few trick-or-treaters anyway. We don’t have family nearby, so I bought one portions worth of a few treats for Thanksgiving, and that was that. No issues with leftovers. I had a lovely little birthday party and ate what I felt like for one day, having skipped treats on Thanksgiving, and I felt fine about it.

Then I wound up in the hospital. Twice.

I must say, hospitals are fabulous for weight loss. There was the 4 days I wasn’t allowed to eat while they waited for my gut to wake up after surgery. There were the 2 weeks of recovery when I had the appetite of a toddler. 6 bites every 2 hours. Then there was the week I got progressively sicker and lost my appetite again, the week I was horribly ill on ivs and anti-emetics and barely managed protein bars or shakes once or twice a day. And even after that, I was still healing and recuperating, which are energy intensive.

From my last official weigh in the week after Thanksgiving to the weight taken in my primary care doctors office the week after I got out, I lost 30 lbs. On the one hand, I feel a little weird about ‘claiming’ that, because I didn’t do anything intentional, it just happened. On the other hand, it looks awesome on my graph.

The thing is, in the 2 months since I’ve been home, I’ve dropped another 20 lbs. That I’ll definitely claim, but it’s still been pretty effortless. WW did that for me. This is not your mother’s WW in the days of starvation and shaming. This latest iteration, based on ever changing and improving science, is pretty easy. Here are what I consider the high points.

Points.

It’s a joke. Points are the current cornerstone of the WW system, and they are the reason it works so well for us.

Based on the WW esoteric formula, which probably includes weight, age, and gender, I get a number of points. My meals are made up of a combination of points and zero point foods. Most everything your cardiologist thinks you should eat is zero points. Lean chicken or turkey, salmon, all fresh veggies and fruits. Points are for other stuff like buttered toast, olive oil, or even cookies. It’s all on you, but there is no reason to be stuck with things you don’t like, and no need to ever be hungry. And, as you lose, you also lose points, which is a little sad to see, but it means you don’t have to constantly worry if you are eating too much, or to sit down and do your own math.

Points encourage you to eat real, whole foods. If you have a cup of chopped pineapple and a banana, it’s zero points. If you blend them up into a smoothy, you’re losing some of the benefits of the fiber, and it’s no longer zero. It also digests a lot faster. I have no trouble at all working the points around my various food issues, although I resent a bit that gluten free foods are higher in points then non gluten free.

The food point database makes things very easy. I’ve tried food tracking in the past and it made me completely crazy. Figuring out grams of this and sorting through a huge database of unrelated things all the time. The search function works really well, it’s easy to adjust your portion of whatever according to how much you ate. It remembers what you had the past few days, so your favorites are easy to find.

I have to say, I’m surprised, but ecstatic at my progress. I’m really glad this came up after I spent the summer rebuilding my gut biome and I was really ready for it. It is much, much easier for me than all the years I low carbed when I never felt satisfied. I would highly recommend it.

 

Summer upgrades

This summer, I’m getting upgrades!

NEW KNEES!!!!

I found a surgeon who is willing to take me as a patient, and this summer I’ll be having both knees replaced. The worse knee in July, and the second in September.

Obviously, I’m very excited about it.

Back in 2015 or so when I saw my first orthopedist about why the heck my leg hurt so much, he sadly looked at my xrays and carefully explained that, although there was a lot of damage, I was too young, and too fat, and my knees couldn’t be replaced, so I should go talk to these people about pain management.

I wasn’t in a great place at that point, either physically or emotionally. I didn’t go talk to other surgeons. I didn’t do any research. I just accepted that as a fact, too fat for knee replacement. Somehow I believed it was a limitation of the replacement parts or something. Eventually in 2016 I went to see a pain specialist, and I’ve been working with her ever since to manage some basic functionality. And I’ve just lived with ever decreasing mobility and constant pain.

Fast forward to last winter. My hospital adventures started in an emergency room, and although most of that is hazy because they were very prompt at providing the good drugs, one moment stands out very clearly. I was listing the various medications I’m on for my records, and I think I said “and I’m on x dose of y pain med because of my knees. I have severe osteoarthritis in both knees, but they won’t replace them because I’m too fat.” And the nurse’s reply rang in my head like a bell and I still remember it perfectly, in part because I didn’t expect profanity. She said “That’s the biggest load of bullshit I’ve ever heard. You need to get another opinion.”

Since she’s a nurse in a hospital, I assumed she definitely knew something I didn’t, and I filed that away.

Fast forward to my eventual release from the hospital. The second time. My insurance provided homecare specialists, including 2 therapists, one for arms, and one for legs. I made sure to ask each of them who they thought was the best person locally for knee replacements. They each independently recommended Dr F.

Once I was feeling better, one of the first things I did was call for an appointment.

“I’d like to make a new patient appointment to see Dr F at the Alexandria office.”

“Alexandria, that’s tough, let me see…oh, here’s one next Tuesday.”

“Perfect.”

So I only had to wait a week to get in to see him. By the time the day of the appointment arrived, I was so nervous. I wanted this so much!

Dr. F was a jerk about my weight. But it wasn’t completely superfluous. The statistics are clear, fat patients have more problems and more infections post surgical than normal weight patients. I was not happy that he gave me a long lecture about bariatric surgery and told me to go talk to these people, here’s a pamphlet, as if there was some chance I hadn’t already looked into that option. In truth, by the end of my appointment, I wasn’t perfectly sure he’d accepted me as a candidate until he said “I’ll send the nurse in to schedule.”

It’s on!

Now I am very, very focused on doing everything I can to improve expected outcomes. I’m back in the pool 2 days a week, working as hard as possible. I also found out that they now make seated elliptical machines and I’m using that to improve flexibility in my knees as they are now. When I saw my pain specialist I discussed the need for extra meds so I can manage the pain of more exercise when my latest cortisone shot wears off in about 6 weeks. I’ve always been as sparing as possible with the good drugs, but now that there is an end in sight, I’m willing to take what I need to build strength.

Turns out my pain specialist also respects this surgeon, he’s the one she refers knee patients to. Although she agrees he has the social demeanor of, well, the average surgeon.

I can’t even properly explain how excited I am that I’m going to get my life back.

My hospital miracle

There was one more thing that happened, or rather didn’t happen, at the hospital that was so significant, I believe it needs it’s own post.

Not a single bit of fat shaming.

A total of 22 days of being surrounded by medical personnel at every level, in 2 different hospitals, and not once was I made to feel like everything that was happening was caused by fat.

That is some kind of miracle.

I’ve been fat shamed by medical professionals forever. At 50 years old, with a history of things like asthma and allergies that have required constant management, I can more easily name the doctors who did not attribute every single issue to being fat. There was one doctor at my University health center that I was always willing to wait to see, no matter how long it took. An excellent doctor in Los Alamos, who left after only 2 years for a more lucrative practice somewhere else. The doctor I finally found in Colorado Springs after I fired 3 in a row. Here in VA it took me 7 tries to find someone I could stand, and not until she left practice to stay home with her kids did I find someone really great.

When I had my first ever surgery years ago (removal of my gall bladder and while you’re in there lets add a tubal ligation) the surgeon I’d worked with and liked had a death in the family the morning of my planned surgery and her patients were being covered by one of her practice associates. Who was just horrible. Fat shaming the minute she walked in to my room, very obviously resentful of having to deal with my horrible body, and generally unpleasant. She did my surgery, but tried to pawn me off to the original doctor when I came for my follow up. When I did see her, she ignored the fact that I was completely miserable with a bladder infection and only a few days post surgical. She thought that was the perfect time to push weight loss surgery.

I wonder how much her horrible care was responsible for the fact that I later developed hernias. The surgeon I eventually saw about the first one was also a complete jerk about my weight, even though I had just lost over 100 lbs when I saw him. He definitely blamed everything on my weight, and I don’t feel that he particularly treated me with respect, even though he did the surgery and provided acceptable after care.

So for my most recent experience, you can imagine my shock and delight when my surgeon treated me…like a person. As though hernias happen to normal sized people every day. As though my size didn’t make me stupid, slovenly, or disgusting. I actually stopped her for a moment, as she was about to rush out of my follow up to set up the orders to readmit me to the hospital for infection, to thank her for treating me like a person, for not treating me with disdain. She almost looked shocked and said “of course”, but I told her, not of course. Not at all. It makes a difference to us, and it’s rare.

She was lovely, but it wasn’t just her. Over the 2 weeks I saw each of her associates at least once. They were all professional, and I have to say, mostly even nice-which is frankly unusual for a surgeon. My kidney doctor could have blamed everything on my weight, but he never even mentioned it. My infection specialist. Every single doctor during the seemingly endless process was caring and professional.

Not one even mentioned bariatric surgery.

My experience in the emergency room before surgery was also amazing. One of the nurses actually came in and told me they had a policy against fat shaming and it wasn’t going to happen there. The experience is a bit fuzzy, so I’m not sure if something triggered that discussion, or if she was just proud of the policy. Everyone there was helpful and respectful.

I can say the same thing about the ever changing parade of nurses and techs. I got a new one every 12 hours, and not once did I feel disdain or disgust directed at me. Not once did anyone ever say anything I felt was hurtful or inappropriate.

If you are reading this and you are thin, you may be a little confused or horrified by all this. But if you are fat, then I hope you join me in appreciating the miracle that this represents.

Because I live in DC. This area is full of medical schools and hospitals and a lot of cutting edge medicine is practiced here. Wouldn’t it be completely amazing if one of those cutting edge techniques was to realize that fat people deserve care and respect?

 

After the hospital

Warning, pictures of an iv line below and discussion of syringes and stuff, in case you are squicked by that sort of thing. My favorite cat picture has been added to keep the iv picture off the teaser.

I was finally out of the hospital, but I was not suddenly all better. I still had a drain in my belly, a PICC line in my arm, a blood clot in my leg, and no strength at all.

The most surprising thing about my hospital stay was how long it was. Really, the minute they don’t think you need constant attention, they send you home. The home care industry is huge and they have a lot of interesting things that make it work.

One of the most fascinating innovations is home iv antibiotics (and I assume other meds). This is a good explanation of how it works.

The PICC line is a semi-permanent iv line. Instead of a needle at the site where it enters your skin, they have inserted a very long tiny tube up the vein. They then set the end in a stabilizer that is adhered to the skin. Mine looked very much like this:

That whole assembly and dressing has to be changed weekly. You have to be very aggressive about infection prevention. The exterior ends have a twist connector that seems to be standardized in hospitals. All the syringes and extenders and tubes all appeared to have the same connectors.

They make extender tubes that connect to the short connections on your arm so that you can reach the ends one handed and do your own iv. The home care nurse attached the extender tube for me and then on days when no one came, I was able to easily do it myself. It takes the balloon about 30 minutes to empty. That link doesn’t explain the whole process. First, every time you touch anything, you clean the connections with alcohol wipes, even if you just removed the sterile cap. You flush the line with a syringe of saline to make sure the line is clear. Then you connect the antibiotics and wait. When it’s done, there is another saline flush, to get the last of the meds out of the tube. And then you flush the tube with heparin, which is an iv anticoagulant to keep the line clear of any clots. It was a slick system and the home care people assigned by my insurance sent me all the pieces and part. In fact, I have a ton of left over stuff to donate. You can’t give it back, but a lot of veterinary clinics will accept donations.

The biggest annoyance with the PICC line was showering. It can not get wet. It should not get sticky. It hurts when tugged on. I was provided with a little net sock-thing to go over the dangling parts to hold them still that I’m sure works great on people with arms smaller than mine. Mostly on me it just squinched itself into my elbow. But for a brief time it would stay put, just long enough to protect the plastic bits from the wrapping. Then Mike would break out the PressNSeal wrap, and wrap my arm twice around. The standard width of the wrap worked well enough for the length of my arm. Pat that down so it’s all stuck to my arm, and then tape the top and bottom edges. Then do that every time you want a shower. And be sure he’s on hand to help you take it back off because it can be hard to see the edges. It was annoying, but doable. We went through slightly more than an entire large box of wrap.

One tiny up side of the PICC is that because of the risk of infection, I wasn’t allowed to clean cat boxes. Between the initial surgery and the infection recovery, I got about 2 months off from cleaning cat boxes, which normally is done Every Single Day. I haven’t gone that long without cleaning cat boxes since 1993 when I had my own place and got my first post-college cat. Fortunately a dear friend was doing cat sitting as a job at the time and she added us to her schedule. She did a great job, the cats already knew her, and I got a side benefit visit every day, which was really lovely. 

Then there was still the drain in my belly. That was more annoying to me than the line in my arm. The drainage bag had to be lower than the insertion point most of the time, which left me with a lot of tubing always trying to tangle between my legs, or get caught on my skirt. I couldn’t sleep on my side. It had to be very carefully dressed to keep the insertion point dry.  It had to be drained and flushed every evening. That was really a good idea, as I believe the the whole infection started when one of my original surgical drains clogged long before it should have, and that drain type didn’t have a way to clear it. This one had a connector mid way that could be opened, twist-locked to a syringe of saline, and flushed every day. Because of the tubes, I wouldn’t drive with it, even though technically I was allowed. I had that for 2 weeks.

At the 2 week mark I had an appointment with “Interventional Radiology” which I’d never heard of before my hospital stay. They are the people who drain abscesses and put in drains. I’m not entirely sure what else they do. Mike and I hoped that appointment would be short so he could get home to a work meeting.

Ha. Yeah, right.

Instead, I had a surprise cat scan, just to check things out. This was highly annoying because Surprise. It would have been nice if we could have planned things better. Although, no longer the trusting sorts, Mike did bring his tablet ‘just in case’. Also, I hate that nasty, nasty contrast you have to drink. They tell you it just tastes like water, but they are wrong. If I had known it was coming, I’d have brought something to mix it with so it would go down easier. A trick I learned in the emergency room, so I know it doesn’t interfere with anything.

Some hours later I no longer had the drain. The removal of which was easy. I still had the PICC because the doctor in charge saw something that might be something, and best to be safe. Sigh. But ok, another week of iv antibiotics. I did that, and then I had 2 more weeks of oral antibiotics before I was done. I can’t really do yogurt, so I drank komboucha and took my probiotics every day.

As soon as the drain came out and I felt like I could drive again, I went to a local hair place and got my hair washed. I’d looked into that after my initial surgery. I had no idea you could just show up and pay someone to wash your hair, no cut or trim necessary. And it’s CHEAP. Even at DC prices, I only pay $10, and that’s because I tip 100% on the $5 charge. Completely worth it.

I had visiting occupational (arms) and physical (legs) therapists come right after my release from the hospital. I wish they had started coming a little later. Really, I was too exhausted all the time to do the exercises they gave me to do. I’d gone from 3 weeks of careful surgical recuperation, to 2 weeks of strict bed rest, to suddenly being home. Even walking from my chair to the bathroom was twice as far as it had been in the hospital. Just doing my best to care for myself, getting meals and drinks, going to the bathroom, taking a shower. All those things were exhausting. I didn’t really have anything left for ‘exercises’.

I almost forgot to mention the blood clot. It didn’t hurt, so it was more of an annoyance than anything because that’s what kept me in the hospital for so long. As soon as I was out, they turned the management of my blood thinners to my primary care doctor. Fortunately, blood clot issues don’t really run in my family, so I only need to be on them for 3 months. I go for a blood draw every week or two, and will in fact be going again on Monday. It doesn’t affect me too much except the restriction on getting a massage, which I would dearly love to do.

The week after the drain came out, the PICC was removed. That was a huge relief. At two weeks after the drain removal I was allowed to go back to the pool, my preferred exercise, and I finally felt like I was on my way back to health. Not a short road though. Before surgery I’d been hitting the pool  4 days a week from 6-6:30 am to walk very briskly. It had to be brisk, at that hour the water is really, really cold. When I got back in nearly 3 months later, 15 minutes of gentle walking was wearing me out. I started back at 2 days a week, 15 minutes. Last week was 45 minutes. This week I’m adding another day.

Whew. Way too long a story, I think, but that’s the highlights.

 

 

 

 

 

 

 

 

 

 

 

 

My hospital adventure Part 5

The first week in the hospital, I had a lot of trouble with nausea. They put me on iv meds several times a day. Obviously I also had no appetite. Someone even came to see me because I kept not ordering food. I couldn’t face hospital food. I had no idea if it would be good or not, but the food at the hospital I’d had my surgery at was truly awful. Even the fried eggs.

Fortunately at home I had simple gluten free crackers, and some relatively tasty, allergy friendly, protein shakes and Mike brought me regular care packages. I did fine with that.

After they drained the abscess and I started to feel better, I started ordering food from the kitchen. The food was not at all terrible, if uninspired. The pot roast was actually pretty tasty. They had all my allergies listed in the computer and double checked them each time I ordered.

Which did not stop me from somehow getting a hamburger on a bun. And since I was feeling better, I did raise a complete fuss. Less for me, but because there was obviously a disconnect somewhere in the system to let that happen. What if it had come when I was really stupid that first week? Or next time it’s someone’s creaky old grandma? What if I had assumed it was a gluten free bun and made myself sick from that? It would have extended my already much too long stay. I was very gratified at how seriously they took it. I eventually met the floor nutritionist, the head of the kitchen, and the actual line supervisor in the kitchen. It was really nice to have my food issues taken so seriously.

In the second week one of the techs explained to me how to use the built in movie system, so I got to stop watching tv. It’s a terrible system. They have much edited movies, it was hard to pause, and if you backed out of the movie to stop it for, say, a visit from one of your many doctors, it might randomly send you back to the beginning of the movie. No fast forward, only a 30 second skip. sigh. Fortunately with the PICC line my issues with bending my arm were over and I went back to reading. My kindle was stocked with new books for the cruise we were supposed to take in January.

Which obviously, we did not take. We actually cancelled it right after my surgery because it wasn’t a good idea to go away so soon after something like that, and it turned out to be an excellent call. Not only because I did have a complication, but also because the day we were supposed to leave on our trip we had a huge ice storm, and our flight out was cancelled.

Eventually, after 17 days I lost the extra water weight from my unhappy kidneys, my drain was working well, and my blood thinner numbers got where they needed to be and I got to go home.

My hospital adventure Part 4

The whole first week (yup, there was a second week, I’ll get there) I was in the hospital, I stayed very sick despite two different kinds of iv antibiotics. Not fun.

The best part of my hospital experience was the resident who checked on me at least twice every day. She was attached to my surgeon’s practice, but seemed to always be at the hospital. She was always pleasant and available. On bad days, we talked about cats. She prescribed me xanax without arguing when I was getting stressed out by the yelling man down the hall.

From the conversations I had with her, I believe at the highest levels of hospital hierarchy, IE between my surgeon and a doctor in the department where they do drains and handle infections, there were a lot of conversations that went approximately like this:

“She has an abscess, you need to drain it.”

“The cat scan is inconclusive.”

“It’s definitely an abscess.”

“We can’t find anything in the scans, there’s nothing to drain.”

A few days after I arrived, she asked permission to draw around the huge red area on my belly, so we could keep track of the infected area. I had no problem with that. For the next few days it creeped a bit wider every morning when she checked on it. I stayed sick, and my white cell count didn’t drop.

One after noon late in the first week she came by with some local anesthetic and some empty tubes and aspirated two tubes of ‘inconclusive’ out of my belly. Which was immediately sent off for culturing. It also resulted in me being taken off food and water, again, in preparation of a procedure to finally drain the mess.

They eventually drained 750 mls of disgusting out of that abscess. Which will more than fill a bottle of soda from a vending machine. Then I had a nice new drain to keep me company and I started to feel better right away.

I didn’t know that you can only keep an iv line for a week. Then they have to change it. After a week of being horribly sick, daily blood draws, and not eating, my veins were not having any more of blood drawing. They tried twice to insert a new iv, and blew out veins twice. While they were preparing to drain the abscess, I also got a PICC line, which stands for ‘peripherally inserted central catheter’, which is just a long term iv, but it has some extra challenges because they get infected more easily. 

Unfortunately, at this point we realized that no one had every set up the compression booties that help you not get a blood clot, and no one had ever given me the anti-blood clot shots that you should get when you’re stuck in a hospital bed. So I got sent for extensive ultrasounds and surprise, surprise, I had a blood clot.

Meanwhile, either the incredibly harsh antibiotics, or the cat-scan contrast, or both, had upset my kidneys.

I spent another week in the hospital getting my white count down to something reasonable, waiting for my kidney’s to forgive me, and waiting for my blood clotting numbers to go down to the proper treatment level. I had four specialists and the intern visiting me every day.

The second week was a lot harder than the first, because I didn’t feel nearly as terrible.

That gave me time to notice and think about other things.

Which I’ll talk about in Part 5.

My hospital adventure Part 3

I was not excited about going back to the hospital for iv antibiotics, but I was sick enough to not be upset either. I felt pretty pathetic, to be honest.

By the time I was admitted and in a room, it was 1pm and the first thing we did was send Mike to the cafeteria for some food. We’d learned that the cafeteria was only open prime hours and if you missed, it was nothing but vending machines. The night we went to the emergency room back in December, we left the house around 4pm, and Mike never did get to eat that night except some sad nuts and soda from the vending machine. He spent that night completely alone in dark waiting rooms while the custodial staff ran the floor waxer. Not a comforting way to wait.

But back to the hospital intake.

I was not really pleased that I sat on the edge of my hospital bed, still in my clothes and without my iv antibiotics for several hours. I think it was 5pm by the time I was situated. That’s a long time to just sit and wait when you feel terrible. But I did feel very terrible. Too terrible to make a fuss about things. Which, if you know me, is practically unheard of. I always make a fuss if I think one is needed.

To be honest, that week is now a blur. There was a cat scan. There was more than one day when I wasn’t allowed to eat or drink because they didn’t know if I was going to have a procedure done. There was a lot of very bad tv because I wasn’t coherent enough to figure out the video system, and the elbow placement of my iv made holding anything to read uncomfortable, and usually blocked the iv and made it beep. But I clearly remember a few things which may, or may not be in proper chronological order.

Roommates:

My first roommate was perfectly acceptable. She was more or less quiet, her husband spoke at a nice reasonable volume. She was only there overnight, but it would have been fine if she’d stayed. I didn’t sleep that night, but I don’t usually sleep well in a new strange place.

Roommate the second was a nightmare suitable for a sit com. An elderly Somali lady who had fallen. She not only didn’t speak English, but she only spoke an obscure dialect of Somali, so the Somali tech they tracked down couldn’t talk to her either. Her family came and went loudly and often. The nurses, in classic sit com style, always spoke to her quite loudly, because that somehow makes a foreign language more comprehensible. For the first 2 days she fussed and complained all night and ground her teeth and I did not get a lick of sleep. By the third day, she was feeling a lot better. She started trying to get herself out of bed (a bad idea since a fall had put her in the hospital to begin with). She started trying to take out her iv. I was constantly calling the nurses to try and prevent her from hurting her self. No, it was not really my responsibility, but there was no one else there and I’m a decent person with compassion. But it was exhausting. By that afternoon, I lay in my bed and just cried with a sheet over my face. Yes, I was that pathetic.

It turned out to work to my advantage. One of the nurse administrators came by and found me like that. We had a lovely talk, and my room seems to have gotten marked as what Mike referred to as ‘the last seat on the plane’. I had other roommates in the future, but only when really, really necessary. Like after the big storm and freeze when they had something like 20 unexpected intakes from falling on the ice. That poor roommate had managed to break both bones in her leg and one in her foot, but she didn’t drop her baby, so she was satisfied with that. She was only there long enough for the surgeons to work her into the schedule.

The nurses:

I learned some interesting things about nurses. The first was that hospitals are horribly under staffed. Nurses just barely have time to tend to the medical business, ivs and meds and paperwork (all computerized, but still there), and they really don’t have time for the compassionate side of nursing. For example, I was supposed to get up and walk several times a day, but I was labeled a fall risk, so I needed to be watched. Only one ever made sure I got that walk. I did have time to visit with two of the night nurses, and that quiet time to talk felt nurturing in a way I needed. The day nurses were constantly flitting form patient to patient. They all had phones and their assigned patients would be given their number at the start of shift. During the day if one was resetting my iv, the phone would ring two or three times, just in the time it takes to change an iv bag. It was pretty crazy, and I think a big detriment to patient care.

Also, very few nurses were US born. More of the men than women, but still not many. They were from everywhere but. The night nurses I got to know were from Korea, and China, via Australia. I had some fun conversations with the nurse from Cameroon and she was ecstatic to speak French with someone. I had a great discussion with a nurse from Ghana about how her children have no idea how easy life in the US is. They never had to walk miles to get water twice a day.

I’m good with accents, and I don’t have trouble in foreign countries. So it surprised me that it was stressful to me to constantly be acclimating to a new accent every 12 hours. But it really was. I don’t think it would have been an issue if they had all been the same accent, but the constant shift was exhausting. Maybe it was just because I was sick.

Despite the antibiotics, I stayed very sick with high fevers for a week.

Stay tuned for Part 4.