Category: the endo life

committing to me, the endo life Posted on

Five Months Later…

Today officially marks five months since my hysterectomy.

It’s been a little weird reflecting back on it. On one hand, it’s kind of amazing how different my life is from before the surgery, how much better I feel. But then again, there’s also this sameness. Occasionally I forget that I was ever so sick. It kind of makes me laugh that I can actually forget just how much my endo wrecked and controlled my life. “Healthy” was not something I could easily fathom. But here I am. Healthy.

Mostly, at least.

I keep forgetting that it’s only been five months. A little thing called fatigue likes to sneak up on me and remind me, though. The past couple weeks I’ve had some on and off crampy pain. It freaked me out a little, mild as it was — what if my endo was coming back? While I haven’t seen a specialist yet, I’m pretty sure a lot of this is just my body reminding me that we’re not quite healed yet and I need to (big shocker here) slow down.

Feeling so good, I thought I was ready to jump back into too many things. I spent most of Fall Break walking — 7.5 miles just on the last day. All those doctors and the women who’d had hysterectomies telling me it’d take 6-8 months just to feel normal again, and up to a year before the fatigue fully goes away… I didn’t listen. As great as I feel, my body is still recovery inside. I’m not really surprised, though, that I pushed too hard. If I was doing too much two weeks after surgery, of course I’d still be doing a bit too much five months later. (What can I say, this disease had taken about a decade from me.)

Outside of the fatigue, the hardest thing that I’ve still been struggling with are the lingering emotions regarding the implications of having a hysterectomy. I don’t regret the decision. It had gotten to the point where I wasn’t sure how I could live with this disease for 25-30 more years… To live with that much pain, struggling just to get through a day, unable to hold a job, and at my worst level of feeling unworthy of love. I wasn’t suicidal, I just didn’t want to be in pain any more. But at the same time I was planning this surgery with my doctors and my family… one of my younger sisters had just had her first child with her husband. Here was this person — my own blood — who’d married her college boyfriend, who was starting a family… Someone who had gotten everything I thought I wanted. And here I was, in pain every day, no job or school, extremely single, getting ready to remove the option of ever getting pregnant.

I had told myself for a couple years that I was ok with this. It’s sort of a testament to where I was emotionally and mentally, that I had just sort of settled in to this idea that I’d just be single forever. I had started becoming ok with the idea of adopting and being a single mom. Between the disease and emotional abuse from my past, I couldn’t fathom anyone wanting to be with someone so broken. But I wanted a family, so I would just do it myself. My biggest fear, though? That maybe, maybe, there would be someone who would see the real me and be like “yes! I choose her!” but because I had the hysterectomy wouldn’t give me a chance. … And everyone says, oh but this won’t really matter when it comes down to it… When people hear “hysterectomy” they assume everything is completely gone and biological kids are no longer an option. Which, for a total hysterectomy, that’s true. I still have my ovaries. I can have biological kids, I just can’t carry or give birth to them. It does make the whole having kids thing a little more complicated, with needing to plan for a surrogate, but it was important to me to keep my ovaries for that reason. I’m ok with adopting, but I didn’t necessarily want to force that on a partner as the only option.

This idea that I’m not whole, that I’m broken and unworthy, took root years ago. It wasn’t until a few years ago I really, and truly, began accepting and loving myself as I was — even if I felt that person was broken. I was ok with me. And I wasn’t going to let those feelings hold me back from a full life. These past five months I’ve gotten to feel like myself again, my true self. Despite the fears, the fatigue, the worries, my past… Despite all of that, I feel like I’ve been in a really good place. My body is finally starting to match my soul. And though they both might have scars, there’s a wholeness in that which is indescribable.

I just want to run, full speed with arms wide open. Metaphorically, for now, of course.

seriously. and tragically, the adorkable life, the endo life Posted on

Recovery Updates: Or, how I ended up in emergency surgery last week…

Guys. … I suck at recovery.

I thought I was doing all right. I thought I had slowed down, cut back on doing everything and stopped bending as much… I got a big shot of reality and NOPE last week, however.

We’re not exactly sure what happened. I was watching netflix, stood up, and (ok maybe it starts getting TMI), but it felt like I peed myself. So I went to the bathroom, maybe I just wasn’t listening to my bladder and it was fuller than I thought. However… that wasn’t the case. (If pee wasn’t TMI for you before, this next part might be. And I get that, and I’m 100% ok if you’d rather just check out the TMI;DR insta version or even just this video of kittens.)

It was blood.

This wasn’t just typical healing up spotting like to be expected. It was nonstop, with clots. I called my mom, explained that I needed to go to the ER, then went to find new clothes to wear. I had almost filled an entire pad in that time, so decided to spend the rest of the time waiting for my mom on the toilet. It wasn’t painful, but it wasn’t necessarily comfortable either. And I’m pretty sure I was in shock a little, because I was way calmer than I probably should have been.

The ER was busy — as, sadly, our local ER tends to be when you actually need it. As we sat and waited, we overheard that people had been waiting hours. I was actively bleeding, worse when I was standing, and already starting to feel a little light headed at times. Thankfully (for me), I jumped the line and got in somewhat quickly given how busy they were. I kind of felt bad for everyone else waiting — like the pregnant lady who had a small metal splinter in her foot. Anyway. I got in, a nurse checked in on me, then a medical assistant. The room was badly laid out and didn’t have a stirrup bed, so my exam was painful and awkward. More so given the still constant bleeding and clotting.

My doctor was out, so they had to call in the on-call OBGYN specialist from his office. She got me on a stirrup bed and confirmed what the MA thought — I had ripped/popped a suture from my hysterectomy. They removed several golf ball sized clots. It was a mess and just gross. There were two options: try to stitch me up right there in the room, or send me to emergency surgery. Because of the amount of blood — my new doctor called it a “waterfall” of blood — stitching up in the room was not an option. (Which, so grateful because that did not sound appealing at all.)

From the time I started bleeding until I got into the OR, it had been about 4 hours. Four hours of actively bleeding and going through 3-4 or more pads an hour (though we eventually gave up changing them). The surgery was about maybe 2 hours. At least from when I went in until I woke up in recovery. While I woke up easier this time, but was in a lot of pain. However, like last time, I had to pee like crazy. But this time they had taken out my catheter. No matter how I tried, I could not pee. Finally in my observation room, my nurse set me up enough that I could. But I was still calling her every 10-20 minutes. So we ditched the bedpans and I have never been that happy to see or use a real toilet. After that and losing the packing, I was actually feeling pretty good given everything that had just happened.

Since getting home, most of my pain has been muscle and joint pain. Felt like I got hit by a bus. I also had (and still have) a sore throat from having to have a breathing tube again. Since this surgery was unplanned, it meant no prep — I had food in my system from lunch… They had to apply a little pressure to my throat to keep me from essentially getting food in my lungs. It’s one of the last things I remember before the anesthesia knocked me out.

I wish I could say everything has been going peachy since then. I came home very “no bending, no doing thing” … and then just days later I’m back doing things like before I ripped my stitches. Rather than trying to decide on something else to eat, I still reach for the pan in dishwasher I’m not supposed to be reaching for. Rather than just letting things wait, I reorganized the linen closet to make room for all the stuff from the bathroom that no longer has a place thanks to getting a newer (and bigger) water heater in the bathroom closet. “It’s just plastic shopping bags,” I told myself. But it was a whole trash bag full of shopping bags and that’s a lot of bending. The hardest thing is the cats. The roommates were never perfect about remembering to check their bowls, or understanding the nuances of my cats not liking crumbs and thus thinking a bowl is empty even when it doesn’t appear to be. Maybe I could let the other things go, but it’s hard making my cats wait until I could ask for help getting them fed.

It’s sort of this combination of pride and distrust. I can’t bring myself to just ask someone else to keep doing all this stuff for me day in and day out. This feeling of things out of place has such a hold on me that I can’t just let things wait until I’m healed or even ask if someone else can take care of it… And I want to trust that my roommate (I’ve only got one now), would help me with anything I ask… But… She’s busy and has her own things going on, too… And maybe I’m just out of sorts with anxiety, but after a while the joking sighs or “fine/whatever/I guess I’ll help”-s… well.. I start worrying that maybe she is tired of helping. I don’t want to be a burden. But I also know I just should — can’t — be doing stuff like this. If I keep this up, I’m going to end up hurting myself or ripping my stitches again.

I just wish the risk of that was enough to get myself out of my own head and just stop for the next few weeks. No matter how much I tell myself to stop doing things… it’s like I can’t. But I’m going to have to… somehow… I’ve got to let myself heal.

committing to me, the endo life Posted on

How to Survive a Hysterectomy

Important disclaimer and such: I am in no way a medical professional and none of this should ever replace actual medical information. Pretty sure you all already know that, but just putting it out there.

One week ago today, I was rolled into an operating room and woke up with one less internal organ than I’d been born with. As you know, I’ve been dealing with endometriosis for at least 7 years now… Likely longer given that the average time for diagnosis from onset of symptoms is about a decade. Medications and lifestyle changes weren’t really working, and I was sort of running out of options there. (The next level of medication would likely be Lupron, which induces a false menopause. No thank you.) Oh. And also there’s the little matter that my uterus itself was glued* via adhesions to my intestines. So that’s a fun little complication. Given everything going on, something had to go. #GoodbyeUterus 

I had what is called a LAVH — or where they inflate your belly to a giant beach ball, put a few holes in it*, then still pull your baby cooker out through your lady bits and sew everything up. Except the holes, those get glue. It went successfully. There were “extensive” adhesions between the uterus and colon, and apparently also some adhesions between the uterus and the bladder. I got to keep my ovaries and tubes — which as a still young 30-something, neither my doctor nor I were interested in putting me through menopause yet.

Now that I’m a week out of all of this, I’ve got some thoughts/tips on dealing with a situation such as this…

Pre-Op

» The anxiety really is one of the worst parts. For me, getting as much information as I could helped. As well as completely distracting myself (hello 90 hours of Breath of the Wild!).

» Join Hystersisters. While the forum design reminds me of early 2000s with the glitter emotes and all, it is a very good resource for information. Of course, take it all with a little caution, these aren’t medical professionals, just a massive community of thousands of women who’ve had all types of hysterectomies for any and all reasons. I did not find “my tribe” or make any new BFFs from the site, but have appreciated the support. Just be prepared for some women to come off all “well, I’ve had this and now I’m the expert.” I had someone try to educate me on endometriosis despite the fact that she’s never had it.

» Prep the house. For real. You can’t do much after the surgery… so make sure your family, friends, roommate, whomever is on board with taking care of everything else for you. My roommates knew before they moved in that this surgery was being planned and they’d have to spend a few weeks doing all the house work and taking care of the cats. But on top of that, get your spaces set up for your recovery. For me, that’s my bed. Make sure you have enough room for all your stuff (I even had a tray table on the bed for the first 4 days so stuff was in easy reach) and you have plenty of pillows and blankets.

» If you don’t have someone to cook for you, start freezing meals for your first week or so of recovery. I made a lot of soups and stews — granted, two of them didn’t survive — and it makes it easier for my roommate to just take something and heat it up for me rather than have to cook something for me. Go light on salt and grease, and watch the gassy foods. Veggie noodle soup was my favorite just coming home.

» Write down any questions you have for your doctor. Also take notes during the pre-op visits.

At the hospital/Observation

» You’ll spend most of your time pre-surgery having various nurses and doctors coming in to ask you questions and take vitals and hook you up to things. Be completely honest with all of them. Before you know it, they’ll wheel you into the OR, hook you up to more things, and then tell you “ok so in 20 seconds this is going to kick in” and everything will go completely black.

» You may do or say weird things as you come out of anesthesia and start to wake up.  One of the first things I asked about was if I could pee or if I was cathed and could pee… Then the next time I woke up I asked it if was all lap or not — since there was a chance they may have had to switch to an abdominal surgery. Then mostly I was just looking back and forth trying to wake myself up. I’m sure I looked strange, but they’ve probably seen and dealt with stranger.

» Your overnight bag. Ok. So some women go home the same day, others, like me, go home the next, and still some stay for a few days. It depends on the type of procedure and the intensity of what’s going on inside you that they need to remove. I way overpacked. I brought a laptop, iPad, chargers, notebooks, slippers, extra sports bras & underwear, toiletries, slippers, a flannel overshirt, a book… All I used was my cell phone and my charger. (And my insurance & ID cards.) My room had a tv and frankly, if I wasn’t watching HGTV marathons I was talking with visiting family or sleeping.

» You may puke. Make sure the vomit bag is within reach. Between the anesthesia, empty stomach, pain killers, and sweet beverages… yeah… I couldn’t keep things down for most of that first day out of surgery. I think I was more bummed about this because I couldn’t have the rest of my cherry Italian ice (which is considered clear liquid diet approved).

» Use that call button. When I could finally have real food, the orderly put it too far away on my table, and so I stupidly reach and pulled for it to be closer. Bad idea.

» The packing (or as my doctor called it, “the 9-foot tampon”) is the worst. The catheter isn’t fun either, but it helps not having to get up all the time to pee. (And yes, you’ll have to pee all the time. You just won’t really notice because of the catheter. I ask my nurse about this, and she looks over and goes “you’re peeing right now.”)

» You’re supposed to be able to pass gas, pee, and walk on your own before they send you home. I made one bathroom trip and the nurse currently on duty started my discharge papers. My dad made a comment that I looked nervous about all this. YEP. I wasn’t sure I was actually ready yet.

Recovery at Home

» FYI: you use your ab muscles for everything. Everything. They just cut into them, so everything is going to hurt now. Try your best to find a comfy spot and stay there.

» That first poop is going to hurt a lot. Some women compare it to child birth. Not even joking. It’ll probably be a day or three before your first BM, so start some stool softeners. TMI? Well, you just had uterus ripped out of you so… Oh. And yeah. Be prepared to just fart a lot. Gas-X will be your friend. Don’t hold them in.

» Ask for help. I did too much the first few days and regret it. Mentally you’ll feel ready to do everything. Heck, you’ll likely be a little bored, too. But don’t. Let someone else. If people offer to help, let them. Especially when it comes to food. It was a little weird having to depend on my 20-something year old roommates to do everything… but we got over it.

» USE YOUR SPIROMETER. It’s this annoying little breathing exercise thing, but it’s super important for helping with all that trapped gas as well as making sure you don’t get pneumonia. If the hospital didn’t give you one, just be sure to take long, deep breaths.

» Have nightgowns/sleep shirts you like. I slept in my jersey cotton dress for the first two days after surgery. Then finally switched to a stretched out tshirt. Finally my mom bought me a Batman night shirt.

» If you don’t get extra mesh underwear from the hospital (or buy some online), be sure to have larger than your normal sized underwear at home. Make sure the band doesn’t rub on your incisions. Also, apparently you can hand-wash the mesh ones they give you, so maybe don’t just throw them away like I did.

» No matter how much you may want to: do not mess with the surgical glue. I picked off a couple drops that were nowhere near an incision — even the nurses laughed at how messy they were with some of it — but that was it. It’s supposed to dissolve eventually. No scrubbing in the shower either — which is maybe the harder thing to remember.

» If you’re not used to sleeping on your back… Sorry. I’m a side and stomach sleeper. This has not been easy for me. Thankfully I’m too drugged up to care.

» Take and track your pain meds. I’m using an app called Medisafe. It’s not perfect (why I’m not linking them), but it is helping. I want it to be where I just set it to “every X hours” so once I take a pill it’ll let me know when it’s ok to take the next, but I have to set up specific times. Which works ok as long as you’re thinking straight when you set them up.

» Call your doctor’s office if you need to. It’s best they know what’s going on if you have a concern and also they’ll know what to do. Even on weekends, there’s a doctor on call.

» REST. It’s really hard to not do stuff. But your job is to heal. It’s not to worry about the litter box, the trash, the dishes, or the vacuum that someone accidentally broke. REST.

People will think you’re getting so much better before you really are. Which is especially true if you’re like me and don’t always show your physical pain emotionally. One of the roommates commented on day 2 or 3 of my recovery, “Oh, you look like you’re feeling really well!” I laughed. Nope. This hurts. Some of the hyster-sites suggest even when you start to feel a little better, keep dressing like you aren’t — because apparently once you look OK, everyone will treat you like you’re OK.

Most importantly: you don’t have to share any details of this procedure that you don’t want to. Of course, be honest with your doctors and nurses, but you choose to whom and with what information you want to give out. And if you don’t want them to talk about your stuff with others, tell them. There’s nothing wrong or shameful about having a hysterectomy (or any surgery), but it’s your body and your choice.

Overall, the recovery is going well. Yes, I still hurt and get sharp bouts of pain… but overall it’s been well. Especially now that I’m letting myself just rest. Only one incident where one of the cats walked across my incisions, but other than that they, too, have been troopers.

One week down, five more to go.

*My first laparoscopy notes used the words “densely adhered.”
*I was told 3 holes, like my first laparoscopic surgery.. but woke up with 5. The adhesions were a little more intensive than they had first thought.

committing to me, seriously. and tragically, the endo life Posted on

Saying Goodbye to My Uterus: it’s really happening

I’ve been looking at this blank screen for hours. And frankly I’ve been trying to figure out how I would write this post for months now. Regardless, in three weeks, I’ll be having a hysterectomy.

None of it feels real at the moment. It completely hasn’t sunk it yet. This was kind of a long time coming, though. From 2013, where I had my laparoscopy and myomectomy, to 2010 when I was hospitalized for under a week for severe abdominal pain and the word “endometriosis” entered into my life, and all the way back to my freshman year of undergrad (2003/2004) where my cramps became intolerable and I started birth control in an attempt to stabilize them.

Since the laparoscopy, the idea of a hysterectomy was sort of thrown around here and there — but only as a last ditch effort. After starting school again, I knew I wanted a more aggressive approach to treating my endometriosis, which Depo Provera had been a part of, but I hadn’t really known how any of it was going to look. Fast forward to last summer where my abdominal pain sent me to the ER a couple of times… Laying in the bed, I looked over at my mom — I’m not sure who brought it up first, but that was when we decided that maybe a hysterectomy might be something I needed to consider.

After finally getting insurance through the state at the beginning of the year (which was also after 12 denial letters from last year), I spent most of my energy trying to meet with a new doctor, dealing with that frustration and getting pushed off to specialists, and just waiting and struggling to get any information and details from him. Then suddenly, after what felt like a pointless meeting with a general surgeon who basically only told me he needed to speak to my doctor and would call me later, I received a phone call Monday morning from my doctor’s office telling me we had a surgery date scheduled.

It’s real now. It’s happening. At the end of the month, I’m saying goodbye to my uterus.

There are so many emotions tangled up in all of this, that I’ve mostly resorted to doing anything I can to avoid thinking about it. A lot of people are happy for me, including my stepmom who also suffers from endometriosis. Happy to see a chance for me to not be in pain any more. My mom is supportive, however, I can tell she’s been thinking about some of the things on my mind.

This isn’t just my appendix or spleen we’re removing. I know I can live without it, but it does mean major changes for my life. This is a door closing. I’m never going to get pregnant or give birth. My feelings and thoughts are just all over the place. I’ve known for a while that I wanted to foster and/or adopt. More recently, I’ve realized that I just don’t know how I feel about infants. They’re squishy little undeveloped humans, and I’m not sure I could really handle that, especially not on my own. However, I don’t know if maybe I’m just telling myself that because I know it’s no longer an option for me. On top of all of this, I’m barely in my 30s and also incredibly single… I hate admitting it, but I feel like it might be harder now to actually find someone now that I can’t bare kids. This is where I tend to hear the line of “well maybe you’ll meet a divorcee or widower who already has kids!” While I’m not necessarily opposed to that, it has it’s own complications. And it’s not like that’s something I’m going to explicitly seek out or something.

I’m saying goodbye to something I’m not even sure I ever wanted. I thought I did for so long. It’s just the narrative you grow up with: get married, have kids. While society is getting better at accepting “non-traditional” families… there is still this overwhelming notion that a woman’s worth is tied up in her ability to be a good wife and mother. And those two ideas are majorly tied together — to be a good wife you need to be a mother, and to be a good mother you need to be a wife… It’s a circle of misogynistic crap, really, but I’d be lying if I said it didn’t weigh on my thoughts. I’ve talked about it before, but having a “broken uterus” sometimes makes me feel like a broken woman. Getting rid of the organ? Definitely isn’t helping that.

However, I’m trying to focus on the good. I’ve always wanted to adopt, so it’s not like I have no means of becoming a mom if I so choose to do so. Ideally, the right spouse for me won’t be deterred by inability to provide kids via my own body. It’s also 2017 and we’re finally having the discussion that body parts do not define womanhood. And most importantly: I finally will get a chance at getting my life back. My endometriosis has taken a lot from me — from the endless days of just feeling like crap, to jobs, to school. Heck, it’s even effected friendships. I know that a hysterectomy is not a cure in any means for endometriosis. I even know that the adhesions still might grow back. But this may give me a fighting chance that nothing else so far has done. That has to be worth something.

committing to me, seriously. and tragically, the endo life Posted on

Where resting had tricked me into thinking I’m healthier than I am

One of the deceptive things about spending all my time at home is that it makes me feel like I’m doing pretty well, health-wise. Let’s face it, I’m not pushing myself each day and letting my body get much needed rest.

However, when I finally get out and try to do something? I’m reminded pretty quickly that I’m not back at 100%. I’m still sick. Things still hurt. And wow am I tired.

Last week was one of those weeks. Actually, sort of the last two weeks. First I had my niece for 3 days during the last part of her spring break. That part wasn’t too bad. I helped her start some cooking skills, and mostly she just watched netflix or played games. However after that? Last week my dad and family came down, partially to take care of some business stuff of my grandma’s, but mostly because sister #3 had scheduled a campus visit. And because I’m attending (or well… whatever), I somehow volunteered myself to do the tour with her.

I surprisingly made it through the hour sale pitch and 90-minute walking tour without much of a problems. Even a few flights of stairs, too. After lunch, though, we popped over to the Anthropology department — my old home — and hung out for a while before listening to one of my colleagues give his non-thesis project defense. During his presentation I started feeling uncomfortable. By the time we get back to my brother’s house, where the rest of the family was staying/hanging out, I was tired. But the nieces were being adorable with their bikes, so I pushed through it.

Dinner is really where it went downhill. The chairs weren’t that comfortable, but I could manage some. Until one of the twins decided she HAD to be with me and sit on my lap for the rest of the evening. She’s only 3-and-half, so she’s not that big at all, but the added pressure on my already tired legs was a bit much. Back at my brother’s house, my little koala-niece wouldn’t let me go home. I had to come inside with her — and let me tell you, toddlers have really strong grips. I made it to the living room, sat down, and cried. It felt like things were tearing. Sadly this is a pain I’m used to.

I did make it home, thankfully. Though I sort of blanked out on the interstate and had to really concentrate to make sure I didn’t miss my exit.* As soon as I was inside, I checked in with my family to let them know I made it, then took pain meds and passed out in bed. I was pretty much out of it and moving slowly for the next couple of days. It’s been a week now since the tour, and my lower back and hips are still feeling pretty sore. Though, some of that is also because my mattress needs flipping. But that’s neither here nor there.

All this time off has sort of been hard in some ways. The rest has been very nice. But it makes me feel like I’m well and and healthy, and… I’m not so much. Which does do a number on your self-esteem. I’m almost 33 and a 10k-step walking day took me out for 2 days. I think part of this is also hard because the weeks before I started getting sick again in January, I was working out 2-3 days a week and feeling great. It’s like something just flipped a switch and suddenly I’ve got this weak, frail body again. Hopefully soon I’ll get some information from my doctor about what our next steps are… I’m ready to get on this path to rebuild.

*If you remember correctly, my car isn’t driveable right now… My brother lent me his winter car. As much as I’m grateful for it, let’s just say it really makes me miss my little car. 

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And then things came tumbling down

I remember the sense of pride that came with grad school. The warm and electrifying confidence that came when theories began to make sense, or two theories clicked with each other, or with a method. I remember that kind of selfish, and not so humble feeling of “oh man, I am smart” when you’re able to express and expound upon those connections and revelations. I remember the sense of camaraderie, trying to slug through dense texts — only later to have to attempt to suss out something that resembled a well thought out paper on said dense texts. Or at least, I think I remember those feelings…

For a little over a month now, everything’s been a little numb. I try not to feel much of anything any more. Maybe some boredom here and there. It’s a self-preservation thing. Often, I don’t even realize I’ve gone into this mode.

Though this part of it started mid-February, it seems the pieces really go back further.

If we look way back, maybe this all started with “the incident.” When I was harassed, followed, closed in my own office, and then followed more, all by one of my colleagues in the graduate program. We were only a couple weeks into our first semester. The whole thing triggered something deep in me, and it took months, with help of a therapist, friends, and a trusted mentor, before I felt safe on campus again. It was definitely a set back, but one I felt I overcame.

But really, I think this started a couple months after that. As much as this is a story about my mental health, it’s also a story about chronic illness. I don’t exactly remember when it happened, maybe November, but my endometriosis became bothersome. Bothersome… I missed classes. I missed work. But I guess it didn’t feel too out of the ordinary. This is just life with endometriosis.* However, my bothersome condition was not convenient for the job I was working at the library. In December, after missing more shifts, I lost my job. It sucked, but I thought maybe I should just focus on school and I’d figure the work thing out later. Maybe this summer when I would be out of money again. I finished the term, an outside of needing an extension on a couple papers for my bio anth course, things went really well. Hell, I gave an amazing presentation on agency theory and postmolds and felt on top of the world.

Yet, as the second term started, my health began to be bothersome again. Whenever I’m due for my next Depo shot, the medication I’m on to control my endometriosis symptoms, I generally feel like crap for the week before the new shot. However, this time it started a little earlier. And I ended up being out the entire week I was waiting for my next injection. When I tried to come back, nothing had improved. I finally made it on campus one Tuesday, but only for about an hour before I was sobbing in pain at my desk. I eventually gathered myself up enough to go tell my professors I wouldn’t be in class today. As I was crying in the office door way, one of my professors quickly stated that we should talk soon, and that I should really, really consider a medical withdrawal from the semester, as she didn’t believe I could pass this semester.

Here’s the thing with depression and pain: when you’re dealing with one, the other is significantly more bothersome. That word again. Bothersome. So as she’s explaining this to me, I panic and make myself freeze so I don’t have to process what she’s saying. As soon as I am out of sight of any other people, I lose it. I remember driving home from campus, more upset about the possibility of having to quit the semester than from the pain I was experiencing physically. My professor wanted me to take time to seriously think it over. When I got home, I talked to my dad and stepmom. I was too afraid to talk to my mom. I talked to a few of my gaming friends. If my professor had already decided that she didn’t think I could pass my classes at this point, how could I? Before the end of the day, I’d made an appointment with the appropriate office on campus to fill out the paperwork.

And that was it. Six weeks into the semester and it was all over. This same week, though, my stepmom’s father passed away. I also hit a pothole pretty damn hard, and was worried I messed up something on my axel or alignment. It was after my brother and I came home from the funeral we discovered something had broke in the power steering fluid line. If you’ve never driven a car without power steering, I highly do not recommend it. Not unless you have Hulk strength and no chronic pain.

So in the scope of a week, I lost my school and my car. All of this after loosing my job — just another job I couldn’t hold. And long before that, my self confidence and the physical desire to be in a relationship. All I could see before me was wreckage of my life, all caused by my body — all of it just out of my control.

When I finally talked to my mom a week later, I was sort of surprised how supportive she was. For a long time, I felt like she just didn’t understand this condition I was attempting to live with. For a long time, I’ve felt like such a failure. Since my initial hospitalization, I haven’t really held a job. I had one for a while, but I’m pretty sure the real reason I was let go was due to the fact that I didn’t want to switch to a cheaper insurance plan. In that job, I was let go a month after my surgery, for “budgetary” reasons. Through all this failure as an adult, I’ve continually heard my mom’s sighs, her constant worry about my lack in ability to care for myself financially. I didn’t want to tell her about yet another failure. However, not being in grad school is a big thing, and I knew she’d find out eventually. I mean, she lives 15-20 minutes away and just one simple “how was class” or “what did you do today” would reveal it all. But as we sat at the kitchen table, not really looking at each other, she was calm. As I made disparaging jokes about myself and how can’t do anything right, she just corrected me that this is all just something in my body that I have no control over. And that maybe now is the time to get it taken care of.

That’s sort of the plan now. To take care of everything. I’ve seen two specialists now. Well, had introductory meetings with them. Those doctors’ appointments where the only thing that really happens is you plan more doctor’s appointments. You spend more time waiting than you do with the doctor themselves. So I’m just in this weird in-between place. I have no school, no job, no car, and no definite plans for treatment yet.

Even after the health stuff gets taken care of — whatever that ends up meaning — I’m still not sure where I go from here. Withdrawing 6 weeks into the semester meant messing up my financial aid. I now owe a little over $1300 to pay back the loans from this semester. Unlike other school loans where you get 6 months after you finish to pay them back, this one is due immediately. Between my health and my car, I still can’t work. So, I’m not sure how any of that is going to resolve itself. I just know that if it doesn’t, I can’t register for Fall classes. So while I might finally get some relief regarding my health once we finalize some aggressive treatment plans, I may have just given up any ability to finish my Masters. All of this because I just didn’t have the energy to prove that professor wrong, that I could still bounce back this semester and pass.

There’s too much to feel, and quiet honestly, when I make myself look at it all, I just don’t know how to cope. So I let myself become numb. I know wherever I land, I’ll figure things out, but I just can’t let myself think of that yet. Can’t let myself acknowledge that any part of what I was working so hard towards might be over. The only thing I can cling to now, is that I finally have insurance and can finally see doctors. It’s one of the only good things I’ve got right now.

* And that’s a sort of thing on it’s own… lack of some pathology reports, and now I have one doctor saying I don’t officially have a diagnosis… It’s just another thing I don’t want to think about too much right now.

the adorkable life, the endo life Posted on

That time of the month

Yeah, I know, I made that “ugh” face, too, with that title. However, thanks to science, I actually don’t get a cycle any more and thus that aspect of “that time of the month” no longer means anything to mean. Just because I don’t get periods any more (yay!), doesn’t mean I still don’t have other sorts of cycles that fluctuate throughout the month.

Like, that time of the month where I go into cooking binges and my kitchen is a wreck. I’ll make all these different meals, and have leftovers for days for each. And suddenly there’s 3 loads of dishes just waiting for the dishwasher. This closely corresponds with the time of the month that I’d rather order pizza or take out than cook, because cooking means cleaning.

Or there’s the time of the month where suddenly all my shoes end up in my living room. I’d like to say this mostly happens in the transitional seasons like autumn and spring — when the weather changes a lot, and thus so does your wardrobe. However, well, it tends to happen regardless. Just get so tired, and my slippers are already out in the living room, so I just switch shoes there, rather than taking them back to my closet.

Similarly, there’s the time of the month where I don’t put my clean laundry away. This current batch has to have been sitting out for at least two weeks now. I’ve taken it out of the hamper and put it all out on my bed so I’d have to deal with it, only to throw it all back in the hamper at the end of the day. Right now it’s all stacked on top of the dresser. It’s a lot closer to actually being in the dresser. Sort of.

There’s the time of the month when I have like 5 papers and presentations going on, and papers and notes and books just keep multiplying taking over all the surfaces in my house. Scattered throughout those are little wrappers of snacks — gummies, granola bars, peanut butter crackers, chocolate — all the little bits of fuel to keep me going. All the mail gets lost during this time because any stable place I would normally put it is now covered with school stuff. So I keep trying to find a new safe place for it.

The worst is the time of the month when I run out of things to binge on Netflix. I’ve had to sort of watch things in themes. Right now it’s a lot of cop/detective shows, of which there’s a plethora. Not watching any mainstream US ones. Things like Luther, Marcella, The Killing, Happy Valley, Doctor Foster… Ok. That last one’s not a cop show. But really the theme beyond cop shows is messed up personal life, mystery-ish or twist-ish show. No clue what I’ll watch after I finish all these. (Which, I pretty much have, except for two of them.) I can’t really do the silly campy shows too well. Some British ones, yeah, like Miranda or even old ones like Ab Fab, but I’ve never really gotten into others.

It’s kind of interesting how you start noticing other trends and cycles in your life after the main one that dominated everything, often to detrimental effect, is over. When it comes down to it, it’s rather nice having these as my little frustrations and annoyances. Definitely better than the original cycle.

committing to me, the endo life Posted on

The next leg of this journey with endometriosis

This morning I got my first Depo Provera shot, thankfully in my arm and not my butt.

Most of you know I have endometriosis. Some of you even know most of the journey I’ve been on in regards to treatments and just daily life with this painful disease with no cure. I was officially diagnosed in 2013, but was first hospitalized with debilitating (and yes, literally) pain in 2010.

The main treatment for endometriosis is a laparoscopic surgery to excise all of the lesions within your abdominal cavity (or wherever else the endometriosis is growing). This surgery is also the only way to officially diagnose the disease. For the day-to-day life, well, some women are one-and-done after their surgeries, but for most it’s taking birth control regularly. I was on a variety of birth control pills to a varying degree of success. Mostly, though, over time, the birth control pills become less and less effective. In some cases, it’s like my body doesn’t even recognize that I’m on the pill and everything goes haywire.

That happened last fall. I was on a new, cheaper, but much higher dose of birth control. My body absolutely did not like it. I didn’t feel like myself at all. So I found a new doctor, who put me back on the last pill I had success with (but was too expensive for me to keep up with, which was why I’d been off the pill for a year and then was convinced to try the cheaper option). That pill worked well. For three months. And then I started noticing the pain coming back, and the nausea becoming more intense that I could handle on a reoccurring basis. Oh, and I was becoming highly emotional. I was crying during that Food Truck Challenge tv show… any time they donated something in honor of someone else.. I lost it completely.

And so, like I’ve done time and time before, I went to my doctor to talk yet again about my treatment options. Slowly and surely, I’m heading down the path towards a radical hysterectomy, but as I am still “young” they want to keep my childbearing options open as long as possible. (I, personally, am leaning towards the toss them all out I’d rather adopt for this reason and many others option. But hey, apparently doctors know what better for me about my life? Ugh.)

I can only been on Depo for 2 years. It’s a shot every 3 months. But with it, comes a high risk for decreased bone density, so we have to watch for osteoporosis. Which means I’ve got to get better at taking calcium supplements. And then, of course, after these 2 years are up, need to figure out if I go back on some formula of pill or another… or… who really knows what next. I’ll be 33-34 by the time I’m done with this series of shots. I’m hoping during this time I’ll be able to have another laparoscopic surgery done, mainly just to see how things are going inside me. If the amount of endometriosis is worse, or the whole adhering of my organs to one another is the same or worse as my initial surgery, well, I’m leaning towards the radical option. If it’s the same or better, well, that’s when things get fun as we have to figure out how to manage all of this until I eventually hit menopause. Which also means dealing with this until I hit menopause. Which is what? Another 20 years maybe? I’ve had “bad cramps” since high school, so I’ve already dealt with this for a decade and half or so. Regardless, it’s been far too long.

While I’m hopeful for the Depo to work, I’m hesitant too. Not just because of the bone density thing. Depo, according to the nurse who jabbed me today, is the #1 endometriosis medicine to cause weight gain. That alone almost made me want to go in another direction. Since starting treatment with birth control (which Depo is a form of), I’ve gained significant weight. We’re talking about 45lbs in about 5 years. Now, yes, some of that is lifestyle and diet. But a lot of it is just a side effect of my medications and also just my body’s reaction to the disease. Learning that I could gain even more weight, when I’ve been struggling to lose all of this already? Well, it’s a kick to the self esteem.

My self esteem has taken some pretty big hits over the years thanks to this disease. It’s hard to feel good about yourself, let alone feel beautiful and worthy, when you’re in constant pain, when you bloat all the time, when you are nauseous almost everyday, and when even just basic sexual excitement causes immense pain… How do you have a relationship with all of that? I know women do, but I’ve been struggling. What guy wants to date a girl who feels broken?

So I focus on other things. I know I can have an amazingly satisfying life without a romantic relationship. I’m super excited (and loving) my path in anthropology and at BSU. I’m spending more time with family. I’m working on my friendships. I am basically doing what I can to not let this hold me back. I know I should treat my dating life the same way, but if I have to make a sacrifice then that can be it. At least until I can make that sacrifice of giving up my organs and chances of carrying and birthing a child myself. And I think overall, I can be ok with all of this.

For now though. It’s just wait and see how my body reacts to the Depo. Hopefully it’ll work, and I’ll live out the next two years as normally as possible… and then go from there.

committing to me, the endo life Posted on

It’s a plan, and that’s a start.

Most of you know that I suffer from endometriosis. And after this past year of being off my medicine, “suffer” is definitely, 100%, completely the most accurate way of describing it. The physical symptoms, the pain, it’s just been getting worse and worse each month — as has the depression that’s come with it.

It’s basically gotten to the point where a hysterectomy seems like an ok idea. When a radical surgery, removing organs from your body, seems like a thing you want to do, well… that’s a hard and deep place to be in.

Of course, not having insurance, it sort of makes any option a non-option, so… Yeah.

Thankfully, as part of my tuition, I get to use the health center free of cost. And that includes access to an OBGYN. So I made an appointment, and finally saw one yesterday. She got my history, and gave me what looked like a pamphlet from the 80s. Asked me how much I knew about endometriosis. Well, I’ve known I’ve had it for over 5 years. That’s plenty of time to google. (And, you know, talk to doctors.) And after that she gave me her opinions of a possible treatment plan.

I’ve had the laparoscopic surgery, which, does a lot. And I’ve been on various type of birth control: low dose (which my body basically ignored and my cycles kept becoming closer and closer together), continuous progesterone-only (which was fine, though contributed a bit to my weight gain), and continuous combined (which also worked but became too expensive to stay on at the time). With any of those, if I missed a pill, or was more than an hour or two late taking it, the pain returned — and sometimes returned as badly as if I’d never been on the pill at all.

She first suggested the Depo-Provera shot. It’s a form of progesterone. However with Depo they don’t really want you on it long term. Maybe a year or so. She said after this, she would suggest Danazol then GnRH — these basically put you into a false menopause. Fun times, right? Basically she said the typical plan goes through all the hormonal options first as to not eliminate any chance of future pregnancy.

See. I’m 31. I’ve been dealing with endometriosis for at least 5 years now — at least since the symptoms became a problem. If I was in my mid-20s, yeah, maybe I’d be more concerned about that. About having my own biological kids. But, as I’ve mentioned before, I have no plans of letting this disease — or my continued singleness — keep me from starting a family. There are a lot of kids who need homes, who need families. And a good number of them are beyond the infant stage, which makes me feel less weird/bad about not being so sure about dealing with a baby 24/7.

Anyway. After talking to this new doc, we decided to try a different variation of the birth control pill. Another combination pill that I’ll take continuously. This one has a somewhat higher dose of the hormones, so hopefully there won’t be any issue if I accidentally miss a pill. I’ll give this a go for the rest of the semester, then see how I’m doing. If it’s not the best option, then we’ll switch to the shot. After that? Well, time for another surgery to see how things are looking inside (and to remove all the adhesions)… If it seems worse than before, time to look into more extreme measures. If it’s not as bad or on par, well… then we’ll work from there. No need to remove organs if I don’t have to.

But, yeah, I’m super over this disease. I’d like to get my life back. And not just two-thirds of my life, all of it. I’d like to not miss school, or have crappy paychecks because I couldn’t make it in (and don’t have sick leave). I’d like to maybe get into a relationship again. It’s a hard disease to deal with. But having a plan is sort of making it easier. So we’ll see how it goes. Fingers crossed, and all that, right?

the endo life Posted on

(maybe not so) causal ideas about the future

My 31st birthday is coming up in a couple months. While I’ve really enjoyed 30, the realization of 31 feels a little different. Not bad different. Just holy whoa you’re heading into real adulthood different. Right now I’m just 30. But soon I’ll be in my 30s.

A handful of years ago, I had all these ideas about what I’d do in my 30s. Mostly circling around what I’d do around 35-36. It was things like wanting to buy my own house or maybe look into adoption or fostering for real, since you know, it’s been an interest of mine for the last 10 years. It was just stuff that I was like, yeah I’d like to do this some day, let’s push it off to my mid-30s, since that’s far off and everything. Suddenly they’re not so much. They feel so real now.

My mind keeps racing towards one of those particular ideas. That if I’m still struggling with endometriosis around 35-36, I’d look into a hysterectomy.

This isn’t anything I’ve talked with a doctor yet. It’s just been medicine, then the laparoscopy, then more medicine, and then just sit and wait and see how I do. The pain hasn’t gone away. And now that I’ve been off the medicine for about 8 months, the pain is only getting worse. And so that comment I threw out casually about “if I’m still dealing with this in X years I’ll just remove those organs”… well, I’m feeling the weight of it.

I realize I don’t have to have this procedure. But at the same time, I just want the pain to end. However, even just having this sort of deadline of when I might consider this really drastic measure, the main thing I think about is “I have to deal with this for 5 more years.” Five years. I don’t want to be strong for 5 more years. But at the same time… removing my uterus takes away every chance of me having a child of my own. And yeah, I know I said I want to look into adoption, but I don’t know if I’m ready to think about the idea of giving up that option.

I still struggle with this idea of who wants to date a chick with a broken uterus. But that sort of becomes even more painful when I think of what guy wants to date a girl who voluntarily removed her uterus (yes, to get rid of the pain caused by an incurable autoimmune disease, but still). I wish I could say this didn’t bother me so much. But I’d be lying if I said this disease hasn’t made me feel like less of a woman. I know that’s all bullshit. I know it. However, this is the disease that has me wanting to remove internal organs, so…

I mean. Yeah. So 5 years is still a ways a way. A lot can happen in 5 years. In fact it was 5 years ago that I was first hospitalized for this. Since then I’ve changed jobs, started a couple non-degree school programs, quit a couple non-degree school programs, lost a job, traveled a lot, moved back home and started a second degree… So who knows where I’ll be in 5 years or how I’ll feel. Just now, however, maybe need to give it more than just a passing thought.