Weight

As of this morning I weigh 114.2lbs.

I weighed 120lbs in early July. And 134 in January (and the entire year before that).

Watching my weight trickle down (I was going to say slowly, but it isn’t really slow at all. I’ve dropped a pound a week for the past month.) is hard enough. Getting complements on looking thin is even worse. I don’t want to be losing weight. I want to be healthy. I want to be fit and strong, not thin and weak.

I mean, yes, I am not bloated and distended like I am pregnant anymore, and I am glad about that. But I want my stomach to look flat because I have good abdominal muscles, not because it’s slowly sinking into itself.

I’m tired and frustrated today. And I really wish my stomach would let me just fucking eat (or drink!) something without being in stupid pain or incredibly nauseous.

Almost 2 years post-op

I had my endometriosis excision surgery almost two years ago. And it was life changing. I honestly didn’t remember how being pain free felt until after the endometriosis lesions had been cut out, and I had healed up from surgery. And that’s even with the gastroparesis pain I didn’t realize I was having.

It’s been about a year since I stopped my aromatase-inhibitor and progestin. I haven’t been on any hormonal control since.

And, I am terribly disappointed to admit, I think my endometriosis is flaring again. Either it wasn’t all removed, and what wasn’t removed has grown; or it has returned; or my possible adenomyosis is getting much worse and mimicking endo symptoms. No matter the mechanism that familiar pain is returning. It started just with my periods… the rectal pain, the vaginal pain, the ovarian pain, the sucker-punch to the gut… but now some of the pain is occurring between periods as well. That pressing, cranking, outward ballooning feeling… like I imagine one of those Medieval pear torture devices must feel, is currently making me miserable.

I knew endometriosis is a chronic condition, and that my journey with it was not over with my surgery, but I was hoping for a few more years before any symptoms returned.

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. 😉

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!

Monday Share – Lets talk about sex.

I’ve brought up my difficulties with sexual intimacy–particularly penetrative intercourse–here before. But I haven’t talked about it in quite some time, because quite frankly I haven’t had any interest in sex in a very long time.

But I read this BuzzFeed Article What It’s Like To Date When You Can’t Have Sex the other day, after it came up on my Facebook feed, and it made me want to speak on the topic again.

I related to the article so much. And not that I’ve really dated with my conditions (did I ever mention Mr. Liar was my first, and only, boyfriend?) but the feelings of inadequacy, disappointment, and fear resonated with me. I know those feelings. I’ve struggled with them, as has been seen in early posts here. And I’ve slowly come to terms with them.

Mr. Liar and I have had penetrative intercourse once in the past year. That’s once since we’ve been married. It was about six months after my surgery, and thus about six months after our wedding. And while it didn’t hurt nearly as bad (I didn’t cry!) as before the surgery I still wouldn’t describe it as all that pleasurable or pleasant for me. (I suspect I have vulvodynia as well as my other conditions). Now, we do have other intimate relations, but generally as far as sexual contact goes, it is almost always something I do for Mr. Liar (whether that is me bringing him to orgasm, or him attempting to bring me to orgasm–something he really enjoys doing, but doesn’t happen often), because I just don’t find it all that enjoyable. After years of excruciating pain and hormone “killing” medications, I have almost no interest in sex. I hardly ever get aroused, I don’t find orgasms all that great (I mean, at most they’re ok) and I have tons of visceral negative memories that come rushing up–even if Mr. Liar has never pushed me or been anything other than amazing and supportive. In all honesty, I would much rather have a nice shoulder or foot massage. And recently I have come to terms with that and made it clear to Mr. Liar, which I think has helped us both. It has helped us with a sense of balance and reciprocation–because I love making Mr. Liar feel good, and he loves making me feel good, and now we can both do that in a way that isn’t just about sex. It is still intimacy. And it is wholly relieving.

That isn’t to say that I don’t still have the occasional fears regarding sex or penetrative intercourse, like: trying to conceive one day and what that might entail. But it is incredible knowing I am loved for who I am, and what I can give, not what social media has made me think needs to be a part of my relationship.

 

The beast has awoken.

I ran out of letrozole and norethindrone on Thursday, and my new insurance won’t cover anymore of the letrozole. It didn’t take too long for my uterus to take advantage of the lack of regulation. The beast is back.

Waiting.

I was going to write a post about my worsening depression. How being unable to feel productive and capable of doing the things I need to be able to do, and once could do so easily, was driving me into a deeper pit of melancholy and despair. But I didn’t. Because the depression robs me of my ability to get things done just as much as my other ailments.

And then I had a [mildly] productive week. I called Dr. S’ office to check on the neurology referral… which I am still waiting on. They were apparently playing fax-tag with my medical records when I called early last week, and I haven’t heard anything since.

I even worked on submitting an abstract and summary for a poster at an academic conference, with a co-worker. I hadn’t felt that academically capable in a long time. Unfortunately, it didn’t last, and as soon as I tried to read the literature for my own scholarly interests again, my brain went back to sluggish understanding and struggling to make critical connections. I did manage to get three chapters read last week. That’s nothing really; I should be reading more at least 5 or 6 chapters or articles a day, and doing a lot of writing. But I’m trying to stay positive, and take some joy and accomplishment from what I am currently capable of doing.

And I crocheted up a couple of drink cozies as part of an ongoing project I’m working on. They’re for a fundraiser the greyhound adoption group I volunteer with has been invited to participate in, in October. I’m getting a head-start now, before classes start again. I’m making drink cozies, some clutches, and a houndstooth scarf. I’m hoping they will go over well and bring in some nice donations.

Unfortunately, over the past few days I’ve also had a worsening of, what I assume is, gallbladder symptoms. Mainly right sided pain- under my ribs, but some upper left sided pain too. And an increasing feeling of heart burn… but not really heart burn. Plus some right shoulder pain. It’s not just after I eat though. Its starting to be pretty prevalent throughout the entire day.

I’m also having more pelvic pain. That lower right side pain that never went away after surgery is still there. It isn’t nearly as bad as it was before, but it likes to pop in and remind me it’s still there.

I’m exhausted, and I don’t know what to do next. Do I try to go back and see Dr. S and have the gallbladder out? Can I even afford to do that this summer? Will I ever get an appointment with the neurologist? Will it even tell me something? Will I be able to make it through the next semester? Through my PhD program in a timely manner? What do I do if I can’t?

I don’t have the answer to any of these questions. I feel like I’m stuck in a holding-pattern when I desperately want to make some progress and move forwards. But I’m just waiting. waiting. waiting.

Update

The ultrasound with a fatty meal revealed no stones, no obstructions, no thickening of the gallbladder wall, no sludge, bile ducts within normal diameter, and an ejection factor of 75% 20 minutes after consuming the fatty meal.

So, now I have no idea what to think about my gallbladder. The HIDA was low, the ultrasound was on the high end of normal. Nothing consistently reproduces my symptoms.

It’s been a week since the ultrasound and blood work, and I still haven’t gotten the blood work report yet. Which I find strange. I got the ultrasound report on Monday. And a liver panel and lipase and amylase don’t usually take that long to run, as far as I’m aware.

I haven’t heard from Dr. S about either test. Or the referral to the neurologist, and I’ve had numbness whenever anything presses on my middle finger for about three weeks now. The involuntary leg spasms have been more frequent the past couple of weeks. And the ocular flashes are getting more frequent again. Its something I would like to get checked out before classes start in fall. I’m already behind enough on my own research and academic progress, I really don’t like being behind in classes too.

The PainStation

Almost every night, while we eat dinner, A and I watch our favorite subscriptions on YouTube. Usually Lets Plays from various gamers.

Last night, we were watching the Achievement Hunter’s video: Let’sPlay The PainStation. I’ve embedded the video in case you want to watch, but will put a synopsis below the video in case you don’t.

In the video the Achievement Hunters challenge each other to a game of pong, using the art exhibit The PainStation. Each player must keep one hand on the “pain execution unit” – a metal grate on the side of the game, while playing. When a player misses, and the ball hits one of the designated “punishment” blocks, the player is subjected to either: 1) exposure to heat, 2) electrical shock,or 3) being whipped with a small wire whip. None of the “punishments” are intended to cause damage to the player, but can build in intensity and apparently become quite painful.

What I found most interesting in watching the video was how quickly the players become distracted, and how quickly their ability to play the game decreases. I couldn’t help but think the PainStation serves as an effective example of how hard it is to think clearly and concentrate while in pain; something those of us with chronic pain do every day- or nearly every day, and often at a higher intensity or greater range than was applied by the PainStation.

It was a timely reminder to myself as I grow more and more frustrated with my ability to think clearly and work effectively as I would like. It is remarkable that we get through every day as we do.

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.

Had some serious left sided upper abdominal pain today, and have been feeling like shit lately. I’m so glad I’m seeing Dr. S on Friday.