July 9, 2014
Have you heard? Lately there’s been a rash of rainbow unicorn glitter induced “miracle” pregnancies amongst the infertile of the Twitterverse.
If you are one of those people, please know that I am sincerely happy for you. This post is not about you personally. It’s just my reaction to this collective occurrence. Because it seems to be on a roll as more and more of you achieve this magical state of beglittered unicorn.
Intellectually, medically, statistically… I know these pregnancies are somewhat inevitable. So few people are truly and completely INfertile – as in not capable AT ALL of EVER reproducing.
If you have a 1% chance then…odds are some of you are going to get pregnant the old fashioned way. I mean, that’s what my RE originally advised us to do because 1% is not 0%.
So I get it. I know. In my brain. But my heart doesn’t always listen to my brain. I also know you feel guilty. And I’m sorry if this post makes you feel more guilty. But it’s not about you.
This is about me. [Duh. My blog and all.]
I had a hysterectomy. This magical state is now completely IMPOSSIBLE for me to achieve. 0% chance. When I made my decision to evict Medusa I did it with full knowledge that there would no longer be even a glimmer of hope of achieving that magic. But at the time I wasn’t witnessing tweep after tweep succumbing to the unicorn. And now I am.
Fresh on the heels of a failed surrogacy. The surrogacy which basically allowed me to not fully process my hysterectomy because there was still a chance of a bio baby. I mourned the loss of being pregnant but I didn’t mourn the loss of biological children.
And now I’m supposed to be doing that mourning that I didn’t do before. But now I’m doing it in the midst of beglittered unicorns.
Well…not truly. I’m not regretting it. Not exactly. I’ve just got a really really bad case of the What Ifs. What if I had waited a bit longer? Would I now count myself amongst the unicorns?
It’s kind of impossible not to ask that question right now. Once the glitter is in your house it’s impossible to get rid of it. And it has taken hold (hostage?) of my brain at the moment. All these unicorns are getting it everywhere.
Yeah, I know, my uterus was fucked. So how could I even think this? I can think it because OldRE thought it might still be possible. My uterus was not necessarily incapable of carrying to term – the odds were just not in favor of that outcome. Just like all these couples (mostly the lady halves) I see on Twitter. The odds were against it. But it happened anyway. Could it have happened for me too? Highly unlikely. BUT WHAT IF?
If you’ve got a cure for the What Ifs I’d love to hear it. I fear it’s basically the same thing as glitter, though: once it’s in your house there’s NO GETTING RID OF IT.
[Seriously, this is not even metaphor. Have you ever done an art project with glitter?]
The next time glitter deigns to enter my house it had better come with a kid attached.
December 19, 2013
People keep asking me how I am doing. I’m fine, some pain still but mostly I’m getting around pretty well. I’m not 100% yet and just sitting up for long periods of time is still problematic, but I can function on my own. I can drive, I can walk, I can work, etc.
No, but, how are you feeling EMOTIONALLY about having it gone?
Um…good riddance? It hasn’t hit yet?
At this point I’m starting to think it’s NOT going to hit. I thought I’d have some delayed emotional reaction to evicting my womb and any possibility of EVER carrying a child. But, so far…NOPE. I guess I’d already accepted that as fact long before Medusa was ousted. She was declared unfit so long ago. And twice even.
So here’s how it went down, sans emo.
It was a dark and stormy night. Well, dark and rainy anyway. It rarely storms here. We had to leave the house at 4am to drive the hour long trek to the hospital to arrive at 5am – two hours before surgery. Everything went pretty smoothly. I got checked in and paid my copay (which was more than they had originally told me but still quite reasonable). They gave me a space age gown you blow warm air directly into. BUT FIRST. Why don’t you just go pee in this cup real quick? Sigh. No, I’m not pregnant. But I will play your game ONE LAST TIME.
I’d been anxiously awaiting Aunt Flo for several days and wondering where the hell she was. She chose that pee-in-the-cup moment to finally appear. So, ten minutes later, when I’m in the super warm gown [Can I get one for home, please?] and the nurse is asking questions and comes around to When was the first day of your last menstrual period? I got to answer, “As of ten minutes ago, it’s TODAY.”
After the flurry of initial activity, Right Guy and I waited around for about an hour before anything else really happened. The anestesioloigst came in to introduce himself and explain his plan, etc. He was very sniffly and kept wiping his nose but claimed he wasn’t sick. It was a little unnerving but what can you do? I decided to take him at his word and just believe that he wouldn’t put anyone at risk. I explained that I had taken my Cele.brex just before I left the house as instructed and he seemed happy about that and confirmed my intent to try and go home after surgery. [The Celebrex was supposed to allow him to give me less general anesthesia and more local, thereby reducing the side effects of the general in the hopes of quicker/better pain management post-op so I could go home instead of needing to stay overnight. And I guess it worked.]
Finally Dr. CanDo arrived. She is ALL BUSINESS. You ready to get this done? Yes. Let’s do it then.
OK, she said more than that. And I was given the opportunity to ask any last minute questions, which I did. But it was still a pretty short conversation. Which suited me just fine. Let’s not drag this shit out. I appreciate a woman of few words.
The anesthesiologist came back and said it was time for the good meds. At some point the nurse had put in two IV lines. They wanted two two because it was robotic surgery. Something about the position you’re in during surgery and if anything goes wrong they want two lines. The explanation is a bit hazy. What happened next is A LOT hazy. The good meds kicked in HARD. I looked at Right Guy and smiled stupidly and said something like, “Holy Shit.” I honestly don’t remember if I said “I love you” before they wheeled me away. I know I meant to but, damn, I was out. I also don’t remember if I had to move off the gurney to the surgery table like I have had to in the past for pretty much every surgery I’ve ever had. I don’t know if my memory of doing that was from this surgery or one before.
Point being, I GOT THE GOOD DRUGS.
The next thing I remember was waking up in recovery and immediately trying to assess how much was done. I determined that I was not in enough pain for it to have been overly extensive. Don’t get me wrong, I was in pain, but not more than I had expected. The nurse said something about the catheter and did I want it out. Um, YES, please. And then he said it was time for more good drugs. And good drugs they were although I stayed awake too enjoy them this time.
I overheard him saying, “hysterectomy and bowel resection” and starting freaking out. What? Bowel resection? Wouldn’t I feel worse if they had done that? Also, he just gave me crackers to eat. Surely, I did not just have my bowel resected? I can only assume he was either misinformed or that there was someone else in recovery with a bowel resection.
After a cracker or two and a little juice they wheeled me back to the recovery area where you can have visitors and someone roused Right Guy and fetched him for me. He apparently slept through the entire thing. He claims he wasn’t fully asleep but later my surgeon said he was. Whatever, he hadn’t slept AT ALL that night and if he got to miss the anxiety of waiting so much the better. Again, I overheard the nurses talking and I heard something about “only one incision.” Really? Me? Not possible. I tried to mentally feel my belly for incisions. I wasn’t ready to see it/them yet. It does kinda feel like just one but that CAN’T be possible. Whatever, it is what it and I need to concentrate on other things right now. I got some more juice and some jello. I knew I had to pass tests before I could go home so I was determined to drink plenty so I could pee and go home.
I was a woman on a mission. Don’t fuck with me when I’m on a mission.
I waited until my bladder, which felt very weird, simply had to be full before attempting verticality and peeing. I rang for the nurse and she walked me to the bathroom and instructed me to pee in the measuring cup (no idea what those are called) that was tucked under the toilet seat. Walking was not as bad as I had feared. Peeing was not as easy as I had hoped.
Peeing after having a catheter is always a bit weird and slightly painful. It took a few minutes for nature to kick in. The nurse knocked and asked if I was OK. I guess I was taking longer than I realized but I didn’t want to force anything. Finally it happened. And I guess I performed well and met their requirements for volume. When I got back to my bed the nurse said something about an ultrasound and I nearly cried at the thought of someone putting pressure on anything in that general area. They were talking about checking my bladder for retained urine. Then they looked at my output and determined I could skip the ultrasound. Whew. Score one for me for waiting until I was bursting so I could pee in high volume. 😉
Now we just had to wait for my surgeon to get out of the surgery scheduled after mine since neither of us had actually talked to her yet. I had since confirmed with the nurse that I did indeed only have one incision. She asked if I’d like to fill my prescriptions at the hospital pharmacy. I said yes. Right Guy asked where it was so he could go get them and the nurse said, “Oh, you don’t need to go over there, they deliver them.” Say what?! What you talkin”bout, Willis?
The pharmacy delivers and the gowns have heat pumped into them. That alone is worth an hour drive. Silly me, my last few surgeries have been at university hospitals and this one was private. Yes, I think I need to go back to the private sector for ALL my docs from now on. So much NICER.
Anyway, it took awhile but the prescriptions finally showed up as did Dr. CanDo. Her first words? “Who wants to watch a video?” Me, me, me! She tossed the DVD to Right Guy and said I should probably wait a few days to watch it. [I STILL haven’t finished watching it] When I asked her about how I only had one incision she simply said, “Magic” as if she owned a HArry Potter wand. She told us from where she removed endo and mentioned surprise that she found no adhesions. Pretty simple fare for her, I think. But I’d rather have her expertise and not need it than the other way around.
And so I got dressed and dutifully sat in my wheelchair while Right Guy pulled the car around. The weather had gotten much worse and I had to do a bit of back seat driving, which I generally don’t do, because I really did not want to survive surgery only to die in an auto accident. Also…I’ve hydroplaned before and totaled my car doing it. It’s an experience I do not wish to repeat as I’m sure I wouldn’t be as lucky. But we made it. I set up camp on my sofa with some juice, Better Cheddars, Pops’ iPad and all my drugs. And I pretty much stayed there for three days straight. Oh, and the trend of GOOD DRUGS continued at home with delau.lid.
I drank A LOT of fluids so that I would have to get up frequently. I did this for two reasons:
- I did not want to get a post-op UTI. I recently discovered that I have developed an allergy to the OTC drug that alleviates UTI symptoms so I pretty much hope to NEVER EVER have one EVER again.
- Getting up was painful but I knew that the more I did it the easier it would get and the faster I would recover.
So, yeah, that’s my big recovery secret: drink a lot so you pee a lot. 😉 It kind of sucks at first but it gives good results.
By Day 4 the pain was starting to back off a bit and I was moving around more easily and felt better about attempting to sleep in my bed. I even logged in to check my work email and say Hi to my boss.
And now I am 4+ weeks post-op. In general I’m doing well. So well, in fact, that I keep overdoing it which brings back pain. The muscles surrounding that one incision are decidedly unhappy of late. I’m having a lot of trouble discerning where my limits are. I tend to only realize I have passed them well AFTER I’ve done so. But, all things considered, I’m still doing really well. And the emotional breakdown I’ve been expecting has yet to occur.
Dare I tempt fate and say it won’t?
November 19, 2013
I have a confession to make. I suspect I will get some flak for it. Well-meant flak, but flak nonetheless. I will just offer this disclaimer: this is how I FEEL. And there are no right or wrong feelings.
So here goes: I have never felt like a true member of the Endometriosis Club. Endo and I have an extremely complex relationship. In the words of Iñigo Montoya, let me esplain.
I was first diagnosed with endo a few months shy of my 21st birthday. After about a year and a half of symptoms. The OBGYN who did my first lap said he saw it, diagnosed it as Stage II, but that it was too small to laser. Apparently it was also too small to properly biopsy since the pathology came back negative for Endometriosis – a fact of which my next OBGYN never tired of reminding me.
For the next seven years I was on some manner of birth control – low estrogen BCPs used regularly and continuously as well as three years of Depot Provera. As long as I stayed on birth control, alternating between regular use and suppression, my symptoms were very manageable (assuming the diagnosis was even correct).
During those years I also did a lot of research on this horrible disease. What I found scared the shit out of me. It became more comforting to think that the negative biopsy was correct and maybe I didn’t really have it. After all, I was not like all the women I read about who visited the ER on a regular basis due to severe pain. I had not had lap after lap trying to rid myself of it. I had not had to quit or lost my job. That woman didn’t look like me. And I didn’t want to be her.
Sure I had vague urinary symptoms that I suspected were endo related but no one could tell me what they were or how to fix them. Test after test revealed nothing wrong. I finally decided to just stop complaining about it. It wasn’t that bad. No ER worthy pain. No surgery recommended. I still didn’t look like that woman.
Call it denial if you want. But I did know it was real. I just didn’t WANT it to be real. And I knew when I stopped BCPs to TTC with Wrong Guy that it would be a problem. And it was. Three/Four months off BCPs and I was on Lupron. Seven months of Lupron shut me down pretty well. So well, in fact that it took an additional five months for AF to show. By then the marriage was over and I went back on BCPs.
Still, there were no more surgeries, no horrible pain. I got off easy. It didn’t take me ten years to get a diagnosis. I got one in under two years. It was still hard fought but I had help with that – a doctor cousin who believed me and helped me quite a bit. But again, that is just one more way in which I differ from most. I simply am NOT the face of endo. I got off easy. So easy.
My body shut itself down several years back which is what prompted me to jump on this fertility treatment train. No one knows why my body shut itself down. I only know that when I had to go off Nuva Ring to get the last bits of confirmation testing done I was TERRIFIED. I was terrified the pain would return.
It didn’t. For three years with lots of HRT and fertility drugs the endo stayed away. I was on high doses of bio-identical estrogen and the endo stayed away. Did I ever really have it?
I still can’t answer to what happened in the past but I can tell you what was found yesterday during my hysterectomy – a bit on the right side, a bit more on the left side and a large concentration hiding out underneath my cervix. Everything else was clean. Again… I got off easy.
Time will tell if all my recent symptoms resolve. I hope they do but I suspect some will remain.
Here’s what I *think* happened.
I think I always had some endo.
I think it all went away when my body shut itself down.
I think it only came back when my adenomyosis got so bad that it started spewing out from the hole in my uterus.
I think that all the new places I felt pain was the recent endo. All the old pains/symptoms, if not somehow uterine, may still remain.
I have/had endometriosis. But I still FEEL like I’m not worthy of the badge. Endo has not left my life and body in tatters as it has many women. Some people talk about how there is no “pain olympics” that there’s no winner (or loser) of who has suffered most. But I feel like so many women have suffered exponentially more than I from endometriosis.
I’ve had my share, more than anyone deserves, of reproductive bad luck. But the majority of it wasn’t due to endo. And so I struggle to identify as an EndoSister. Accepting that label feels like disrespecting all the women out there who have fought much harder battles than I.
I have intentionally held off on sending my pic to EndEndoForever because I didn’t feel like I was the face. I thought I’d wait for surgery and see how I felt after. I still don’t feel like the face. I do not feel that my story accurately represents this horrible disease. If you have endo and feel otherwise, I know EndEndoForever is still looking for pics.
November 17, 2013
November 15, 2013
Today’s NaBloPoMo writing prompt is: If you could quit one bad habit instantly without difficulty, which would it be?
I am going rogue today because this arrived in the mail today.
And it needed to be posted.
I’m not one to hang a uterus on my wall normally. But I have never EVER seen a piece of art that made me feel so…not alone. This piece felt like someone made it SPECIFICALLY for ME.
It came from an Etsy shop. Click on the image to go to there.
Thank you to my #FoxTroop #TwitterFairies for sending it.
Oh and, if I could be better at finishing things I start, that would be a good bad habit to break.
October 17, 2013
I mentioned this on Twitter about a week ago but everyone must have been off looking at something else [shiny baubles no doubt].
I FINALLY named my hangry uterus something other than AngryUte.
Perhaps this is not big news to everyone else but as she nears her demise I’ve felt more and more strongly about naming her. Having a name for something gives you power.
And so… I named her… Medusa.
Because she’s ugly and her wall has all sort of offshoots like Medusa’s snake hair. [I seriously have GOT to get the image from my HSG so I can post it]
And she’s just a mean hangry bitch.
I really hope Dr. CanDo doesn’t turn to stone in the middle of my surgery.
October 3, 2013
My guess is that it has not gone unnoticed on Twitter that one day I’m tweeting about pain and silly GYNs who don’t want to give me more pain meds just to make it to surgery and the next I’m tweeting about running a 5k. It’s confusing. Even for me.
So… here’s the deal. Most days I am in pain. Most days it is not so bad that I cannot walk/function/go to work. Of course, I do so operating on 800mg of ibuprofen every 4-6 hours (usually closer to 4 than 6). That’s 4 Advils at a time, people. [And, yes, I DO worry about giving myself an ulcer/liver damage, thank you for asking.]
I absolutely despise the pain scale doctors force you to use. The numbers have really ceased to have meaning for me. I have hated this scale ever since I awoke to what I now call an 11
during before (I knew of) my first ectopic. My first thought was that if 10=childbirth there’s no way I can survive it. Only much later did I realize that that pain was likely my uterine wall tearing. Anyway, I also recognize that it’s the only measure we’ve got so I’d better try to use it.
But how can you accurately characterize a constant/chronic pain? Even if it’s only a 3, if you get no relief, the effect is that it starts to feel like a 5 because it won’t go away. I am fortunate that my current pain hasn’t really topped a 7 and usually any level 7 pain is fleeting and doesn’t last long.
But most days I operate at around 2-4 AFTER the giant dose of Advil. But, for some reason I have yet to figure out, it often gets worse with exercise and also as day turns to night.
Evenings seem to be worse, real or imagined. Whether the pain actually gets worse or whether my tolerance just goes down I couldn’t say. But that’s when the narcotics come in to play. If nothing else it gives me a mental holiday from the pain. And that keeps me sane, boys and girls.
Running the 5k was a calculated risk. I had planned to take a prophylactic narcotic for it but I ended up having to drive myself there so that option fell off the table. But I
figured hoped I could hang strong for this ONE event.
And I did. Not having properly trained I knew I couldn’t run the whole way. But I finished (and NOT last!). And you know what pain bothered me the most during the race? My sciatica. Which I presume to be entirely unrelated to my endo/adeno pain (although wouldn’t it be nice if surgery fixed that?!).
I paid for it after the race but it was worth it. Also, THIS happened recently.
Also worth it. So I guess the bottom line is that I’m refusing to let my pain dictate EVERYthing I do. Sometimes I say no. But if it seems worth the pain, I just do it anyway.