Engaged Patient

I am very excited to announce that this Wednesday I will be participating  in an engaged patient discussion with Virtually Connecting.

Virtual Connecting is an awesome group that started in the educational technology world, enabling people to participate in conferences virtually and synchronously- usually through quick discussions between people at the conference in person, and people who could not physically attend. I have participated with Virtual Connecting a few times already, which has really helped me to feel engaged in my scholarship and academic spheres. To say I am excited about Virtually Connecting spanning the chronic illness, constant patient part of my life too would be an understatement.

As I have mentioned in other posts, particularly this one, engaging patients in their medical care is incredibly important to me. Its something I have actually blogged surprisingly little about, care very deeply about, and constantly annoy my doctors with. ūüėČ

I am definitely an engaged patient. It is my life, my health, and something I am actively going to play a role in- whether my medical professionals like it or not. I would love to see a medical system more conducive to medical teams than doctors handing down information and decisions to patients.

Anyway, space to participate live via Hangouts with the Virtual Connecting discussion is limited, but the session will be livestreamed – so anyone can watch along and participate in the discussion on twitter using #vcept. Let your voices be heard!

Gallbladder, oh gallbladder

I just got back from Dr. S’s office.

She thinks the left sided pain may be referred pain from my gallbladder, and that surgery is our best option at this point, but understands my reluctance, especially since the change of resolved problems with atypical symptoms is 41%.

So she’s agreed to do the ultrasound and run the blood work for pancreas function (amylase and lipase) when I asked her to. The ultrasound and blood work is scheduled for the 2nd. It’s pretty much the last test we can do to give us any indication if its the gallbladder, short of removing it.

So, if those results of the ultrasound and blood work don’t give us any new information that contradicts surgery, then I agreed surgery would be the best next move.

Every time I go to her office, I bring a report of everything that’s been going on since my last appointment. My reports have included information about my bladder being reluctant to empty completely, the pins and needles I get in my limbs, and the random muscle contractions that occasionally occur in my right leg– most often before bed (which she said is normal) but also have occurred when I am awake (she said that is not normal). She thinks I should see a neurologist. So I’m going to look into if I can go to the student health center over the summer, and get the student health center to refer me to a neurologist, since the insurance will pay more of the bill (90% instead of 80%) that way. If I can’t go to the student health center over the summer, Dr. S said she can refer me to the neurologist.

I really like Dr. S, and am so glad she listens to me and validates my effort, thoughts, and research into my own health. In my experience, it is rare that a doctor does that. She’s one of the good ones, which makes up for the incredibly slow speed of her office, and why I will continue to see her as long as I need to.

Now I just need to think about the financials. It’s stressful enough that my health causes “speed-bumps” in my academic work and mental functioning (I have had some cognitive dysfunction lately, often switching a wrong word for what I mean to say, and making mental connections is slower than I’d like… Which is NOT conducive to working on my preliminary exam this summer.) But the financials are getting pretty tight. Graduate students don’t make much money.

I have an annual $3000 out of pocket max on my insurance. I need to find out if the “year” is the calendar year or the school year. It’ll make a big difference if my out-of-pocket max rolls over on July 1st, or January 1st. If I’m going to have that surgery this summer, and see a neurologist- with more tests I’m sure, I really want to know if I’m looking at a new $3000 bill, or if it will be less since I’ve had, and paid for, procedures so far this calendar year.

Self-Care in Grad School Is HARD

The title says it all. Being a full time graduate student–especially a PhD student–with a part time job (an assistanceship) is stress full enough. Throwing in chronic illness(es) which have been demanding extra self-care . . . well, sometimes I’m not sure how I manage; but I do.

Today was a particularly bad day. I went to bed in a lot of pain, and woke up in a lot of pain. The sharp, tugging right side pain that runs from my along my belly-button down to my pubic bone never disappeared after surgery, although it did ease up some and become more intermittent. But now it is returning to near daily pain, though thankfully not constant. This morning it was bad enough to make me nauseous. I went to class, with a professor I find frustrating, and while the pain dissipated over the three-hours, my fatigue and poor mood only grew. When I returned home that afternoon, I received a new bill from my surgery, identical to the previous one I had received a few months ago. The problem was, my surgeon’s office filed it incorrectly with my insurance company the first time (he was out-of-network), so I expected this new bill to be different- and far less money. But it wasn’t. And when I called his office, the person who handles billing was out for the day. (I have a lot of anxiety about making phone calls, so finding out the call I made today was for not, and I have to call again tomorrow (ON MY BIRTHDAY! THE DAY I AGE OFF MY LOVELY-WONDERFUL-AMAZING INSURANCE AND HAVE TO SWITCH TO THE BASICALLY MINIMAL INSURANCE MY UNIVERSITY OFFERS TO GRADUATE STUDENTS BECAUSE THAT’S ALL I CAN AFFORD)) was hard blow.That only sent me into a worse depressive episode.

Of course then, getting motivated to do the mountain of classwork, plus personal scholarship I have waiting for me… well was pretty impossible. My husband thankfully pulled me out of a tailspin, but I knew it was on me after that to take some time for self-care- focusing on things that elevate my mood and keep me from tail-spinning again. Self-care that has led to guilt over not doing coursework or scholarship related activities.

It’s a vicious cycle. A cycle that on one hand makes me feel guilty for publishing here and feel as if I’m being a poor student; and on the other hand lets me get these feelings off my chest, share my experiences, and offers a degree of emotional self-care.

Doctor Rant

Visited Dr. B today, after a very stressful morning (my poor doggy woke us up early with bloody diarrhea, so we’re off to the vet this afternoon). I always leave her office upset. She increased my¬†amitriptyline prescription to double the dose, since it had stopped being effective at controlling my ocular migraines. It also had stopped helping me sleep and wasn’t doing a good job of controlling my aching muscles and joints. I tried to talk to her about my aching muscular-skeletal system, but she brushed it off- asking me “do you spend a lot of time sitting, reading?” which of course I do- I’m a graduate student and she knows it, I spend a lot of time reading or working at my computer. But I always have, and I don’t think this pain is a result of that. Then she said, “well have a good day” and left. I know I can be a frustrating patient, but its frustrating for me too, especially when I’m (well, my insurance anyway) paying you to give me your attention and help determine ways to actually make me feel better and have a decent quality of life! And, I was so worried about my dog that I completely forgot to ask her what inflammation test she ran last time she did my blood work. Endometriosis is an inflammatory disease and I want to know if the test is sensitive enough to pick up the inflammation as a result of it. I don’t think it is, but I want to make a well-informed decision about remaining on the letrazole once I have to switch insurance companies in March. The new insurance won’t cover it, and I need to determine if it’s worth paying for it out of pocket. I’m just so frustrated about doctors who blow you off or ignore you, that I’m not sure I can even muster up the strength to call her office to talk to her about it.

I wish my doctors were as good as the veterinarians I take my pets to. I work with them a lot (one of my kitties Icarus just had major knee surgery and was doing continuous acupuncture before that) and they never second guess what I tell them. If I want to test for something, they’ll tell me the cost, and if I agree they’ll do it- not tell me its too expensive so we should just wait and see. They are always kind and compassionate with my animals, and have gone out of their way to make their veterinary experience less traumatic and more enjoyable. They remember me, even when I’m in with a different pet (which is impressive, as I take my pets to a veterinary teaching hospital- part of the local veterinary school, so we’re always seeing different veterinary students, etc.), and always ask how the others are doing. They’ll even call around to the local pharmacies and check with their own to find the cheapest place to get a prescription filled. And, best of all, they don’t brush me off or make me feel bad when I come in with some concern over my pets- even if it turns out not to be anything serious. Yeah. I really wish my doctors were as good as my veterinarians.

So easy to forget.

It’s so easy to forget just how much pain you were in. You’d think when you were in severe pain, or pain every moment of your life, it’d be something you’d recall easily, but it’s not. Once you get a taste of what it’s like to be pain free, or really, just in less pain) you quickly forget how hard it was.

I noticed this before I was in constant pain- when I’d have two weeks of horrendous period related pains and then be pain free for two weeks. It was like every time my period came around, I was floored- not just from the pain but that I’d just done this two weeks before. Like my body was tricking me, to make it not seem so bad, until it was here again.

After my surgery most of my constant abdominal pain was gone, or greatly diminished. I started noticing my joints, all over my body, really hurt- especially when it turned cold, and my ocular migraines were picking up in frequency again. Dr. B prescribed me amitriptyline; 25mg before bed each night. And that really helped. I’ve had two ocular migraines since I started the amitriptyline two months ago (two months ago tonight, actually!), and much of my joint pain and body aches were reduced.

That is, until recently.

The sharp stabbing pain in my lower right quadrant has returned. I think it might be ureter pain, since its the same pain as before surgery and clearly wasn’t resolved with the excision done in that area (right uterosacral ligament; although my hip had been feeling better!). And the fatigue has been creeping back into my life. This past week, my uterus has been crampy and angry. It’s an awful beast. Even on letrazole and progestin I spot every day, and for the past few days have been spotting pretty heavily with pain shooting down my right leg and cramping. I’m blaming the full moon.

I forgot just how bad I could feel. I crawled into bed the other day, curled tightly into a ball, and though “and this is only part of what I was dealing with a few months ago. HOW DID I DO IT?”

It’s so easy to forget how much pain we’ve be in. Sadly, it’s just as easy to forget how we were able to deal with that pain.

In closing, although my new year has started off painfully, I hope it has been relatively pain free for you.

My First Surgery – The Surgery, and Recovery.

I know, this post is far overdue. This semester has been kicking my ass, and because my surgery was two days before the fall semester started I haven’t had a break to actually write this up. So, this will be like taking a little trip back in time.

August 22.

I had to be at Dr. Y’s office for my pre-op appointment at 8:00 a.m., and we live approximately 2.5 hours away from his office and the hospital where I’d be having my surgery- which meant it was a very early morning. I walked the dog, got dressed in my long stretchy skirt and “Ova achiever” shirt, snapped a quick photo to post to Facebook (as seen below), gathered up my things and climbed into the car.

My “Its far too early in the morning, and I’m nervous about this whole surgery thing” look. Please ignore the super messy house in the background.

The hardest part about the morning was not being able to have anything to drink (except a tiny sip of water to take my omeprazole- the only medication I could have, and was told to take, before the surgery), so I had really bad dry mouth.

The pre-op appointment lasted maybe 20 minutes. The nurse took my blood pressure, temperature, and weight. Dr. Y explained where the incisions would be, and asked if I had any questions. Then they sent us over to the hospital to check in.

It took a little while to figure out where we were supposed to go, but we found it and I checked in. That’s when I got my id-bracelet, and the sheet of stickers to give to the surgical nurses. From there we were directed to the women’s surgery waiting room on another floor. We had hardly found a seat when the nurse came to get me. I had to leave A waiting there.

Once we were back in the pre-op area (it was a lot of beds around the walls, surrounded by curtains), the nurse took my weight and height again. She led me to my bed, gave me a gown and socks to change into, and then directed me to change into them. She also gave me a little bag to put my glasses in, so that they could put them back on me as I woke up.

After I changed she opened the curtain up again and had me get into the bed. I sat there a while before another nurse came by and started my IV, and hooked it up to some saline. She was a sweet-heart, and made my experience much more pleasant. Another nurse came by to get my pre-op information again. It was the third time I had given information to the hospital (twice on the phone), but apparently they had just switched to a new system and kept having issues. The nurse who was typing in my information kept getting called away, and then would have to come back and start again, so taking down all my history took a long time.

Another nurse came by and took some blood, and they made me pee in a cup for a pregnancy check- even though there was no way I was pregnant. Better to be safe than sorry I guess. After about an hour, they when and got A for me, and he got to sit with me until they started to take me in for surgery. The really sweet nurse who put in my IV asked me if I get motion sick, and I told her I get very motion sick, very easily. To help me feel less nauseous from the anesthesia, she gave me three different anti-nausea medicines. The first was a patch behind my ear. She also put some stuff in my IV. She said that people had told her that the IV medicine felt kind of like CT contrast (that burning feeling), so she was going to put it in suuuuper slow to avoid that. She spent about an hour putting it in my IV, and I didn’t get that burning. I’m really thankful for that particular nurse.

Just a few moments before I was going in for the surgery Dr. Y stopped by and told the nurses that he wanted me to be awake when they brought me into the operating room, and to put my legs in the stirrups first, to make sure it didn’t hurt my hip. Everything went pretty quickly after that. The nurses brought me the final anti-nausea med. It was this liquid which tasted like a really salty warhead candy. It was pretty gross, but it was certainly better than the bowel prep stuff! Then I had to take a pain pill. It was too big for me to swallow so they had to cut it into quarters and get meme extra water. The nurse who did my IV and anti-nausea meds then gave me an initial sedative, I said goodbye (and I love you) to A, and they wheeled me into the operating room. This part is all a bit fuzzy. I had to switch from the bed I was in, onto the surgery table. It was very padded. They had me put my legs into the stirrups (which , the position for this surgery is like sitting in a chair, but laying down, with your knees bent up that way) and confirm it didn’t hurt my hip. Then I put my legs back down. My arms had to be by my sides, and they strapped them and my head into these padded things, and put the mask over my nose and mouth. Apparently that is when the anesthesiologist put me under, because I don’t remember anything else. I don’t even remember seeing the Da Vinici machine.

I woke up in a recovery room that looked similar to the pre-op room, but with less beds. It was really slow coming out of anesthesia. I’m pretty sure I drifted in and out for a while. The nurses checked my blood pressure a few times, and encouraged me to breath deeper- I apparently was breathing far too shallow.

Once I was more awake, they took off the leads to monitor my heart and had me sit up a bit. And they brought me a Coke, which was amazing. And, thanks to the really sweet nurse, I didn’t have any nausea at all.

After being awake for a bit, they went and got A.¬† He said the surgery had taken about 2.5 hours, and Dr. Y came and talked to him after the surgery, but he didn’t really remember what he said, he just wanted to know I was okay. The nurses then came by and took me to the bathroom to encourage me to try to pee. I was having a lot of trouble trying to move around with my IV still in, so they took it out. I also made a bit of a mess everywhere, as one of my incisions was bleeding a bit and I had some vaginal bleeding from the manipulator they use to get the uterus in the correct positions. The nurses were really kind and helped get everything cleaned up. They asked if I wanted A, and went and got him for me. I don’t know how long I sat in the bathroom, leaning against A’s leg. It took a long time for me to relax enough to pee. It was really nice having him there for support though.

After I managed to pee, I was allowed to go sit back in the bed. I had heard that after the lap. many people experience really bad shoulder pain from the gas they use to inflate your abdomen, so I was expecting that. Instead I got incredibly sharp pain under my left ribs, and a really hard time breathing. The nurse recognized immediately that it was from the gas, and reclined my bed back further, which really helped.

I’m not sure how long we stayed in recovery. But before I knew it, I was being released. I changed back into my loose maxi-skirt and t-shirt, and was taken in a wheel chair by one of the nurses out to the parking garage. Then A helped me slowly navigate back to the car and drove us home.

I think we were home by 5:00pm that night. Maybe a bit later. I climbed right into bed. Since we have a dog and two cats, we built me a protective “fort” around the bed. We blocked off the edge I was laying on with our 48″ x-pen (you know, those fold-able metal gates to contain dogs or other pets). Then I had my adjustable laptop table over a really soft pillow on my abdomen/pelvis, so none of the pets could step on it if they got on the bed from the other side. All and all, the set-up worked pretty well. I don’t remember much else from that day. I think I ate something, but I’m not positive what.

Initial Recovery.

My mom came down sometime the next morning. She and A went and filled my pain prescription for me, and she made me some soup. She also made me get up for a bit and move around- which I really didn’t want to do. For the rest of the weekend she made me move around and eat things. I really didn’t have an appetite and was pretty nauseous from the Percocet I was prescribed, so I mostly picked at food. The Percocet also made me really itchy and feel awful. And, it after taking it for a few days I noticed it also made me stop breathing periodically- which is pretty frightening. So, after four days of higher pain management all I was stuck taking naproxen. It didn’t quite help the pain, but at least I didn’t stop breathing.

The first week after surgery I was useless. I couldn’t think clearly and just wanted to sleep. I did walk around the house a bit each day, and braved going really slowly around the grocery store a few times. I also took a short shower everyday, to help keep my incisions clean. I had four incisions: one at the top of my belly button, two on my right side, and one on my left. They were closed with surgical glue, so there was surgical glue all over my abdomen. My belly was a bit swollen, and a little bruised, but nothing too bad.

I took the week after my surgery to initially recover, but in doing so I missed my first week of classes. So I couldn’t miss the next week. I wore a lot of dresses and loose skirts for the first few weeks of recovery, and took everything extra slow.

On the second weekend after the surgery (Sept 6), A and I got married. That was a really long weekend, but I was already feeling better and in less pain than I had been for ages. I didn’t need to take any pain killers that day, and didn’t use my cane either. I did have to take rest breaks, and forgo dancing though (not that I would have danced anyway- I’ve got no dancin’ skills). And, needless to say, there was no honeymoon.

I had my post-op appointment three weeks after the surgery, and finally got to see the surgical images and pathology report. Dr. Y used the CO2 lazer to cut out areas of vascular abnormality. Cutting out endometriosis is far more effective than having ablation or burning it; those types of procedures can actually make endometriosis worse. Dr. Y cut out 7 areas that he sent to pathology, and drained a large endometrioma (chocolate cyst) from left ovary. The pathology confirmed that I had endometriosis in my right uterosacral ligament, and in some recto-vaginal areas.
Since Dr. Y and I suspect that I may still have adenomyosis, and pain related to that, he also kept me on the letrazole and progestin pills.

Continued Recovery.
I’ve had some aches and pains which felt very similar to before surgery, but have to remind myself that I am still recovering. I had large sections of my body cut out and that takes time to heal. Slowly but surely my appetite is increasing, and my fatigue is decreasing. I still bloat though, so I’m not sure if that is going to end.

A couple of weeks ago, I did start having some joint pains with the cold weather, and with my continued migraines, my primary care physician started me on amitriptyline. I have not felt better in such a long time. There are days that are mostly pain free now, which I hadn’t had in over a year.

I’m not sure of Dr. Y got all of my endometriosis, or if any endometriosis will come back and I’ll need another surgery for it. And I’m sure at some point I’ll need a hysterectomy for the adenomyosis. And while I am not eager to have surgery again (boy did recovering with that Percocet really suck), I am glad I had it when I did. I can’t imagine getting through this semester with out it. And it’s so good not to feel absolutely awful all day, every day, anymore.