thank you ACA

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After this paperwork is processed, I’ll be good to go with Medicaid as of January 1st. I’ll have insurance for the first time in 22 years. I may have cried a little.

post op day twenty

[disclaimer: i don’t usually post disclaimers, but if body ickiness isn’t something you like reading, then this post isn’t for you! in other words, if you have a weak stomach or don’t like hearing about other people’s surgeries and/or innards, and you read this anyway, then i’m not responsible if you throw up later.]

Preston Halcomb posted this on his Facebook wall when we got home from my post-op appointment Wednesday afternoon: Now I’m busy researching pathology report terminology to better understand Mari’s uterus. lol It is a dark, mysterious place filled with lots of words that require a dictionary.

“Week Three”.

I can’t believe it’s been that long already! Where did the time go!?

I’ve lost two whopping pounds, but I’ve lost so much bloat that it’s incredible; my panties, socks, and bras are too big! My big sloppy T-shirts need taken to the laundry room and left on a table for “free to a good home”. I’ve worn rings I’ve not been able to wear in twenty years; blows my mind. I can even lace my shoes tighter. In fact, I think my shoes are a bit too big now.

I feel so good. I’ve been so incredibly up.

Up is a bit troublesome because I’ll sit here and think, “OMG, I’ve gone manic again,” only to realize, no, I’m not manic, I just feel good for the first time in something like thirty years. Seriously, I feel great, and I can’t remember one time in my adulthood when I’ve ever felt this good. And there’s probably some of you out there thinking, “Yeah, right,” but it’s the truth. All through my adulthood, I’ve dealt with all this pain, depression, the growing panic disorder, and gods know what all else. (A member at HysterSisters said she felt “euphoric” for a time after her surgery. ” I just felt so good that all the pain I was having was gone and I was alive and well,” she said.)

And apparently having all this pain removed from my body has quieted my mind, relaxed my muscles, settled my nerves, given me strength, and (as I said above) gods know what all else. I complained those three weeks post-op that my tinnitus had gotten worse. Which made sense. Without all that pain to glom up the inside of my head, my mind is quieter, so the tinnitus seemed louder. Then I realized yesterday, it’s quiet up there. I cupped my hands over my ears. The tinnitus is still there, but it’s very faint. Very faint. I can live with that. Faint is better than screaming so loud I can’t hear anything else. Also (knock on wood), I’ve not had one migraine since I woke up from surgery. Not one. I’ve had minor headaches here and there. Common post-op. But no migraines and no signs of migraines. :knocks wood:

My surgeon said i’m doing terrific. (In fact, everybody who sees me says, “Mari, you look wonderful!” and everybody who hears me on the phone goes on about “how good” I sound.”) My uterus was enlarged, as we’d expected, but not by much; it was only about an inch larger than it should have been. My official diagnosis was Adenomyosis (the endometrium embeds itself into the uterine wall and bleeds there during periods, which was causing most of my pain), fibroid scarring, “chronic cystic cervicitis with squamous metaplasia” (both due to inflamation, which would have caused that pain), and I apparently had some benign cysts on both ovaries and tubes. Hearing and reading the symptoms of Adenomyosis both relieved me and made me say, “That’s exactly it.” Is it any wonder I was in so much pain?? No cancer, and everything else was clean. I have those three wee incisions on my stomach; the Dermabond started peeling off about this time last week (it’s almost all gone now), and my incisions look fantastic, imho. Here’s a gratuitous picture of my twenty-day post-op belly. I think it looks fantastic!

Also, Dr Midboe-Penn said as long as I’m feeling like i’m doing well without HRT, then that’s what we’ll do. I’d like to avoid it if at all possible for a whole list of reasons, and she agrees; she said to keep her posted. So far since surgery, I had two days (the Monday and Tuesday one week post-op) when I had some horrific hot flashes. I’ve been having hot flashes and night sweats for two years, so these are nothing new. But those I experienced those two days were knocked up a couple of notches from what I’d had before. I’d thought I’d wanted to crawl out of my own skin before, but I’d been wrong. This past Friday, when we went to go to bed, I experienced cold chills. I keep a blanket on the bed year around and had Preston put two of those little “throw” blankets on me, and although I was bundled up like it was -10*, I still shivered. My Trazadone eventually kicked in, and I was able to get to sleep. Preston was worried I might have the flu, since we’d been out most of Wednesday afternoon and then all Friday morning. But I totally didn’t feel like I had the flu. Flu is far and away from what this felt like.

From what I’ve been able to find online, including the comprehensive list at HysterSisters, I’ve had perimenopausal symptoms for a long time now, which explains a hell of a whole lot! I had no idea! But the migraines, the insomnia, loss of balance (Preston and I always joke that my vertical hold has given out!), tinnitus, increased depression and panic/anxiety, the chronic fatigue, and the outrageous bloating were the absolute worst. I can’t remember ever mentioning it in all of my surgery/health posts, but when my period would come around, I’d swell up so bad that most of the time I couldn’t even put on a pair of jeans. I’d be consigned to pajama bottoms or oversized (ie, too big for me) elastisized waist shorts and capris. Jeans were totally out of the question. So if I had to leave the apartment for any reason, I’d have to pray my jeans would go on (and close!) and then pray that I didn’t die from constriction while I was out.

Dr Midboe-Penn cleared me for about anything I feel up to – but still no lifting over 10# and resting when my body feels like that’s what I need. Look, my bed is completely made for the first time in three weeks!

I did the dusting Thursday and got most of the apartment but two rooms before I had to go lay down. Since then, I’ve fixed supper twice and our usual big Sunday breakfast this morning! Preston’s still doing the laundry and big cleaning and anything else I feel like I can’t get to on my own. Also, he’s been whining that he doesn’t have as much to do and feels like that he’s not taking care of me like he should be. Maybe I can spend another week in bed to appease his mental health?

He really has taken great care of me, though. He worried himself to a frazzle before the surgery, and the day of the surgery, friends tell me he was an absolute mess. Since I got home, he’s worked himself to death taking care of me. The least little thing, and he’s all, “Don’t you dare bend over!” or “I’ll get that!” or “Don’t get out of bed!” or “Haven’t you been up too long?” He’s taken great care of the apartment, as well, far above what I’d expected. I probably shouldn’t say such a thing, but it’s the truth, and we all know how I am about the truth! lol He’s cooked and cleaned and kept everything shiny and all three of us fed. You know, all the important stuff.

My only complaint is that my outside plants all almost died. Totally my fault. I had failed to tell Preston (and to put on his list) that he needed to take care of them. Whoops. They’re all doing fine, now, once I realized my mistake. But for a few days there, I was worried!

The weight restriction means I still can’t pick up this little guy until I go back for another exam next month.

I must admit, though, that the day he was here, I did pick him up. Several times. He’d pull up to my knees, and I’d lift him. Preston and Dr Midboe-Penn both got onto me for that. I understand, though. I waited how long for this surgery? I totally do not want or need anything to come along and screw it up – especially self-inflicted! But he’s so cute, and he kept looking up at me like, “Why aren’t you holding me, Auntie Gammie?” Broke my heart! (If he really was my grandson, he and I both would be in some big trouble! lmao) But really! How can you leave that much cute off your lap!?

I asked her when I could go out and buy my bicycle (I the colors of that bicycle!). She said, “Go get it on your way home and ride as far and as much as you want!” I’m waiting because I can’t lift it, and I’ll have to take the bus at least part of the way home when I do get it – so it has to be lifted onto the on-board bike rack. I searched all over online and looks like the bike weighs somewhere around 30 pounds! I lifted it down from an overhead rack at Wal-Mart when I first found it several months ago; I’m surprised it’s that heavy!

While I’m waiting to go get my bicycle, I’ve been taking walks. I’ve walked all over the place. Sometimes I’m tired enough when I get home that I want to nap, and sometimes all I want is just to lay down with a book and read. I’m spending more and more time “sitting up” (I sound like I’m Micah!), but if my belly starts to feel the least bit “tired” (or gassy or just “blah”), I’ll lay down.

Our biggest concern is my blood pressure. Down to 98/64 when the nurse took it Wednesday. My surgeon said she’d let my therapist handle that since she’s the one who’d prescribed that particular medication. (I had a visit with my therapist on Friday. More about this further down.)

I had mentioned in my last surgery post that I was concerned about walking all the way to the bus stop and getting on the bus to and from. After it rained the Friday, Saturday, and Sunday, before and I wasn’t able to get out and take my walks, I was even more concerned. But the only trouble I had was that Preston and I left the apartment entirely too early – by twenty minutes – so we had to stand there for the longest time; I was able to make the walk quicker and more comfortably than we’d thought. Then, the kneeler on the bus that picked us up would go down only so far, so I had to haul myself in (with Preston’s help). Coming home, one bus didn’t have enough room for me to sit down and no passengers willing to let someone post-op have his seat, so we had to wait an extra half hour for another bus.

Miss Kitty is still enjoying being my personal nurse – and has enjoyed all of this extended nap time right along with me! And if she thinks I’ve sat up too long, she’ll come poke me, and if I tell her, “Just a minute,” she’ll get mouthy and bossy. Bless her heart, she’s worn herself out taking care of me, is what she’s done. I’ve probably said it before, but it’s the truth – I never would have dreamed she would take care of me like she has. Also, she’s been good about getting around my belly. Since I’ve been home from the hospital, she won’t go near it (although if I’m on my side, she’ll sleep with her head on my boobs!).

But yay! I’m healthy!!

I go back for what should be my final post-op exam with Dr Midboe-Penn on 10/09.

This was great. On the way out to check-out after my appointment, I saw my regular OB/GYN down the hall. I put my chart on the check-out desk and said I’d be right back. Dr Dillon saw me and held out her arms, and she gave me a huge hug and said i looked terrific. She said, “Whenever you pop into my mind, I think about that first day you came into my office. I’ll never forget that.” We both agreed that day was awful. But then I hugged her again and told her thank you for helping getting me fixed. She slapped me on the back and said, “Go enjoy your life!” I suppose I’ll see her again when it’s time for my annual exam on my birthday (what a time to schedule it, right? but that way i don’t forget!).

So, that’s all that.

On Friday, we got up at the crack of dawn so I could make it to a 10am therapy appointment. I ended up having a complete meltdown, which Preston and I both blame on hormones (or lack of hormones) and post-op body/brain fogginess. I didn’t behave well, I admit. But I still think the situation could have been handled a lot better than it was. I’m still considering transferring to UK outpatient psychiatry. I just can’t handle the stress I go through when I go to CKBH. My blood pressure is always through the roof whem I’m there. And no wonder! Every time I go into that clinic, something happens, and I end up upset. I think it’s telling that I texted Thomas later with, “Had a meltdown at CKBH today,” and he wrote back, “What they do now?” Right?

I love my therapist to pieces, but the clerical side is for the absolute birds. As great as my therapist is, I don’t think the clinic is worth the stress.

To begin with, I have to take two buses to get there. So it’s almost an hour, depending, trip one way. That second bus runs only every seventy minutes. The bus out of and into my neighborhood runs every half hour. It makes trip planning and appointment scheduling a complete pita and takes an entire day! (When we got home Friday, Preston said, “Now I understand why you’re gone all day!” and I said, “And think, I didn’t go to Wal-Mart to get my meds on the way home; that would have been another hour.” He looked really tired! I was tired; that’s why I skipped Wal-Mart. We both napped when we got in. Okay, we all three napped.)

Anyway.

We get over there Friday morning, half an hour early – even though we’d gotten off the bus one stop down and gone into Shell then made a run by the bank before walking down the street to the clinic – and I go to sign in. The rececptionist informs me that what they call BlueGrass Care (it’s what you get through that clinic if you don’t qualify for Medicaid) had expired on June 30th and that my appointment that day would be $50. I had an absolute cow. I asked why. She said, “Because your BlueGrass expired in June.” I said, “Well, I was here on the 13th of July, why didn’t someone tell me then, and I only paid $25 that day just like I always do.” She said, “Because your BlueGrass expired.” That’s when I started getting angry. Was that all she knew how to say? So I asked again, “Why didn’t someone mention this when I was here in July?” She said, “I don’t know, but I can let you talk to the person who takes care of this stuff.” On the phone.

Well, the person on the phone talked to me like I’m three. When I’m in a good mood, talking to me like I’m an idiot is the quick way to get your teeth knocked down your throat; I just have no patience for people who treat me like that. The lady on the phone only repeated what the receptionist had already told me. I also have no patience for people who don’t answer direct questions. I yelled at her; I can’t remember what she said exactly or what I said exactly, but I reached the receiver back through the window and let it drop onto the desk. They’re lucky I did that and didn’t throw it through the glass partition. (Meanwhile Preston’s out in the waiting area trying to hide under the book he brought to read because he knew I was getting ready to explode.)

The receptionist said, “I don’t think you can be seen today if you don’t have the $50.” I had already paid my $25 fee before all this hell started breaking loose. I said, “I don’t have $50 because nobody told me I’d need it. Maybe if someone had warned me ahead of time, I could have come to this appointment far more prepared than I have.” At this point, I could feel my blood pressure rising, and Preston wanted to pay the other $25 out of his pocket, but I wouldn’t let him. All I wanted to know was why someone hadn’t done his job and let me know my aid had expired. One more time, she said, “I don’t know. And I’ll have to check if you can still be seen today.” I said, “Oh no, I’m not leaving. I’ll see [my therapist] today. I’ve already paid, and I need my meds refilled, and rescheduling with Heather is a pain in the ass. I bet she doesn’t have anything open for a month, and I won’t and can’t wait for another month.” (Preston said I’d started yelling a long time before this.)

Meanwhile, the entire backside of the clinic was in a complete tizzy because of the cow I had. And nobody was answering my questions. Still. Although someone did say that I would have to renew my paperwork and handed it to me through the window to fill out. So I stood there and filled it out, because by now, I have all that information memorized – I just had to take it to Preston so he could fill out his two little pieces and sign his name – and handed it back. She said, “I can’t take this. You have to get your Medicaid denial letter first then bring it all back in together.” I said, “I have last year’s letter with me. Will that do?” She looked at me like I’d sprouted an extra head. She said, “No, we have to have a current denial letter.” I said, “So if I can’t be seen today, gods know when I’ll get to see [my therapist] again, and I hope you know it can take up to a month to get into the Medicaid office.” She looked at me as if I’d sprouted a third head and shut the window.

So now they’re all in an even bigger uproar. And the lady I’d spoken to on the phone came out to take me back to talk to me; Preston didn’t budge, but in hindsight, maybe he should have gone with me. lol All she wanted was to go on about how the appointments there cost anywhere between $90 and $400 and how I should be grateful of the discount I get. I tried to butt in and say I didn’t give a damn about how much the appointments cost. All I wanted to know was why all this hassle was happening in the first place. She explained about their renewal policy, and I told her I knew all about their renewal policy – I’ve been going there for three years if I count the time I spent going there with Thomas before I started – that I just wanted my questions answered.

She said I need to go to the Medicaid office and get a denial letter and bring it back with my paperwork, and they’d make me another appointment with [my therapist]. I told her, for probably like the nine thousand squillionth time, that I couldn’t wait another month for another appointment. She made it sound like we could just pop into our car, drive to the complete other side of town, go into DCBS, come out with a denial letter, drive back across town, and present the finished paperwork. She didn’t want to listen when I told her that if you go over there without an appointment, you may or may not be seen and that you have to sit there all day. That I’ve gone there before at 8am and sat until 5pm and had to go home empty-handed. I swear she acted like I was making stuff up!

She kept going on and on, and I finally told her exactly how much I hate going to that clinic and how crap like this happens every time I have to be there and that I wanted my questions answered. She kept going on about the money. I got up and went back out to the lobby. I was so upset I couldn’t even tell Preston what was going on. Through this entire fiasco, I kept saying, “I’ve just had surgery, and I don’t feel well,” but seems to me like nobody wanted to listen to me at all about anything.

She came back out some time later and wanted to talk to me again, and I told Preston to please come with me. At the door, she said he couldn’t come back, and I demanded to know why. She’d only said, “It’s going to be okay,” and, of course wouldn’t give me a straight answer. I said, “He’s the one who pays this bill. He’s coming back there with me.” She just kept saying he needed to go back out to the waiting room and that everything would “be okay”. Preston was going to do as he was told, but I was still demanding answers I wasn’t getting. He told me when we got home that they probably violated a gazillion HIPA laws

At one point, the therapist who used to see Thomas came out and asked me if I was okay, but by that time I was a complete blubbering mess. All I could do was sit there and cry. I think I told her I was okay, although she could look at me and know better. Before she went back inside, I said, “Now you know where Preston gets it from, huh?” and she laughed.

Afterward, one of them came out to take me back to take my blood pressure and weigh me, which is their sop. I always weigh either two pounds heavier at that clinic than I do at the UK gynecology clinic, or I weigh two pounds less. That day, I weighed two pounds less. My blood pressure – surprise! surprise! – was 135/98. omg I almost had another complete cow. I wanted so bad just to throw myself on the floor and scream, “See what you people do to me!?” Preston told me when we got home and laid down that I’d been shaking, that he’d not seen me shaking like that in years – nor had he seen me that upset in a very long time (I told him he should go to therapy with me more often!).

I finally got back to see my therapist, and took Preston with me, and we all just collapsed onto chairs and took long deep breaths and huffed out. We had a great session, like we always do. She was concerned about my blood pressure being so low after surgery with Dr. Scheinberg vaginal rejuvenation surgeon and knocked my Propanolol back from four times a day to two. I see her again in November. If I go back. I’ve still not made up my mind.

So that was my week last week. Yesterday, I was so exhausted I spent most of the day in bed reading.

And here I am now. Writing up this ridiculously long post.

I’m going to go put my shoes on and take a walk before it gets dark. I need it after writing this post and reliving Friday. Maybe I should have stopped at the end of my post-op appointment! HA!

post-op day eight

[disclaimer: i don’t usually post disclaimers, but if body ickiness isn’t something you like reading, then this post isn’t for you! in other words, if you have a weak stomach or don’t like hearing about other people’s surgeries and/or innards, and you read this anyway, then i’m not responsible if you throw up later.]

I’m feeling fantastic. I keep joking that my bowels have moved so much that if they keep on, I’m going to start losing stuff I ate back in the early 80s. Restless today and yesterday. I just want to get outside and walk, but I’ve been good and walked around the insides of our apartment for this first week. I took my first adventure outside either yesterday or the day before and just did the loop around our breezeway twice. Today I’ve walked from our front door, down the sidewalk, and across the parking lot twice.

Also, there’s absolutely nothing wrong with my kidneys or my bladder. Once my bladder decided it was time to wake up, it’s hardly slowed down! :snort: While I was still in the hospital there was some minor concern that my bladder was failing to function properly. Dr Midboe-Penn said this happened after general anesthesia sometimes and was most likely because the bladder just hadn’t ‘woken back up’ yet. Worst case scenario, my kidneys had been damaged or failed, which is rare after general anesthesia. I said, “I have a son with kidney failure, and I refuse to go there.” I added more ice and more water to my diet, my catheter was removed, and bingo, my bladder woke up.

Still experiencing some swelly belly, but even with it, my belly is still smaller than it was when I went into the hospital last Monday morning! My incisions started itching Friday – the internal vaginal cuff ones are driving me nuts (probably because I can’t do anything about it! ); the external ones are covered in surgical super glue, which is interesting stuff! I have three incisions on my belly. Two are about an inch long and about mid-belly. The other is somewhere between a quarter and a half inch and is just above my belly-button. That top one is the worst – I have a bit of a belly roll there, and it tends to pull a little when I’m up and about. But I feel better when I’m up moving around and don’t want to just lay in bed doing nothing all the time.

Our cat’s been a great babysitter since I’ve been home. She’s hardly left my side. She takes all my steps and all my sleeps with me. Today after supper, she decided I’d been sitting up too long and herded me back to bed. She’s a great little nurse. Except for when she wakes me up at 7:30am. I don’t know why or when she started doing that, but she has. It’s wearing me out. It’s been mostly okay because that’s usually about when I need the bathroom anyway. But still. 7:30am is early-early for me. I think she’s just disconcerted that Preston and I aren’t sleeping in the same bed right now; it’s making the both of us cranky, too.

I started having some emotional ups and downs on Sunday, but they’ve been mild. I’m on Prozac, so that may be helping to keep me evened out. I started having some really bad hot flashes yesterday morning – worse than what I experienced from this time two years ago until my surgery. I thought I’d been hot and sweaty then. Nope. Those two years were mild times compared to what I’m going through right now. I’m bound and determined, though, to do this without HRT. I’ve long been a believer that once our bodies stop producing something, it’s stopped for a reason, and putting it back in some cases (like female hormones) is a bad idea. I’m going to hold out and see how this continues, how it affects my psychological health, and how it affects my migraines. I see my surgeon again on September 7th and have already written down to ask her if it’s possible to perhaps start a mild HRT program, since I have ‘surgically induced menopause’, and then wean me off them over a certain amount of time. That is, if I’m not able to handle this. But gods know I’ve handled lots worse!

Seriously, I woke up in recovery feeling much better than I have in countless years, folks. This is true. Someone on Twitter said she’d never heard of this happening before, that she’d always heard how stressful and draining surgery is. I mentioned how Thomas felt after his transplant five years ago, how he was up and about and even playing as much as he could get away with the following day. Which got me no response. But it’s true on his count and on mine. I felt like a million bucks when I woke up. One of the nurses was laughing at me because she was trying to get me to move my hands out of my lap, and I was laughing saying, “But I can’t even find my arms!” She said I’d kept everyone cracked up – apparently I’m a comedienne when I’m on anesthesia. :snicker:

When I woke up in the room later with Eddie, Tammy, and Sally there, I felt even better. I had a reaction to the anesthesia (upset stomach; real nasty!), but other than that all I really felt was tired. The nurse gave me a dose of Phenergan for my stomach, and I slept for a while. I was up enough that I had supper when it came. Meatloaf, mashed potatoes, and vegetables. And the best brownie I’ve ever put in my mouth – probably because I was fresh out of surgery. Ha ha ha. I wanted to get up and walk around after I ate, but the nursing staff said it was too soon, that I should really wait until later in the evening or early into the morning to try to get out of the bed. I was bad put out.

But really, when I woke up, I felt like a million bucks; I felt like a different person with no pain already. Of course, I was feeling no pain because of residual anesthetics and because Dr Midboe-Penn had me on some great drugs. Even so, the difference in my body was remarkable. Even from the first time I woke up in my room – up to now still – I’ve had to tell my muscles and the rest of my body that I don’t have to ‘cave in’ because I’m not in pain any more. Seriously – I must have been in more pain than I realized and for a lot longer than I knew. I have to keep straightening my back, shoulders, pelvis, thighs, knees – because they all keep hunching, bowing, clenching inward into a knot. I told Preston earlier today that I feel like I’m two inches taller because I’m standing up straight for the first time in gods know how long. Lying or sitting, I have to force my thighs to lie straight, my knees not to turn in. My pelvic floor, too. I must have been keeping it and my thighs clenched ‘to hold the blood in’, I guess.

It’s just amazing how different, how much better I felt when I woke up. And now, eight days out, it’s incredible how well I’m doing, I think. I’ve been listening to my body and to everyone else, thank you. I’ve not been staying up too long or walking or doing too much. I did sit up too much Sunday and ended up in pain and exhausted; I learned that lesson. Too, anytime Preston thinks I’m doing something I shouldn’t, he says, “Should you be doing that?” No, Mister Nurse, I’ll stop.

I see both my therapist and my surgeon on the 7th – please be kind to me that day, Lextran; I’ll need it! – and have been keeping notes in my ‘medical notebook’ for both of them. (That’s helped me write this post, too; I remember very little about last Monday and Tuesday!) I also keep the  booklet I got from HysterSisters handy – it’s helped me as much as their message board and website. I can look up stuff: Is this normal? Is this right? Is this okay? What am I allowed to do today?

So that’s where I am right now. Actually, where I am is needing to go to the bathroom. As well, Preston’s made cookies, and I’m starving.

[eta: I forgot to put this in my post! And I’d saved it because it’s so true! LOL. It’s so nice to know that this will never happen with me ever again!]

when you sneeze on your period

post-op day four

mari's incisions 08242012

I think my incisions look terrific! They started itching this morning, though – but that’s a good thing. Oh, that big vertical one in the middle? That’s my c-section scar.

pre-op tuesday

Preston and I went to UK Gynecology for my pre-op appointment this afternoon. We were both nervous, and I think he might have been a bit more nervous than I was. Plus, both of us went in blind, not knowing exactly what we were going to be doing, not knowing exactly what to expect. I mean, we knew there was going to be lab work and paperwork. What we didn’t know was how much and of what and where. And if the surgeon was going to flip out and say, “Oh, hell no. I changed my mind.” That last was my biggest worry. Although if she had, I’d have just marched down the hall and found my OB/GYN and dragged her back to the surgeon with me. That would have taken care of that!

I took along my list of physicians and my list of medications to the appointment, so that helped. What I left at home somehow was my list of my medical history! Of all things to leave behind! Sitting here going over my list now, though, I remembered everything. Probably because the last two years, I’ve gone over it and over it. And the last month I’ve gone over it and over it. I think by now I might know my own history as well as I do Thomas’ – which is a good thing.

The nurse and the surgeon both kept saying they were giving me mountains of paperwork to read and fill out and sign, but Preston and I both agreed that I was given maybe a fourth of what we expected. I filled out a complete medical history, had blood drawn, got weighed, had my blood pressure taken, and read and signed the consent form.

Talking to Dr Midboe-Penn is always fun. She tends to speak a little loud, so I always feel like I’m three and have a hearing problem when I’m around her. But she’s a great doctor and very thorough.

I found out we’re not doing a DaVinci after all. We’re doing a Total Laparoscopic Hysterectomy, which is similar, it’s just not robotic. I guess she and Dr Rone changed their minds? That was a bit disappointing, but it’s her choice what type of surgery she thinks is the best for me. Regardless, it’s still basically the same, and the recovery period and all of that is similar. We discussed the c-section I had twenty-one years ago when I had Tayler; we all agreed that my vertical incision is absolutely insane and uncalled for. If for some reason the TLH doesn’t work the way she wants it to – ie, if they get in there and there are problems – then she’ll be making a new incision via my c-section scar. I said, “It’s already there. It’s already fucked up. You might as well use it if you have to.” I thought Preston was going to throw up.

Then we got to have an in-depth discussion about my ovaries. She said she generally recommends the woman keep them but likes for the woman also to have a say in what happens. I told her that I’d rather while she was already in there just to go ahead and take absolutely everything she could – leaving my dysfunctional cervix for the pelvic floor support. She agreed with me. That way, if they were in anyway causing any of my problems, they’re gone. Also, if there’s a chance, and there is, they could act up later, they’re gone. So I don’t have to worry about that – because there’s not going to be anything in there to worry about.

I asked about an abdominal binder, and she said she doesn’t recommend them. She said it’s better for the incisions to stay open to the air. And she agreed with Preston that one might likely put unnecessary pressure on my sciatic, which would be one of the last things I need during recovery. I said, “I made it through my c-section without one anyway,” and she laughed.

Also on the consent form, I signed the consent for my uteri pieces (that’s what Dr Midboe-Penn called them too!) to be sent to any current uteri studies.

One part of the consent form, she said, “There’s supposed to be a sketch here of what we’ll be doing, but I’m not drawing it. I can’t draw for shit, so we’re skipping that part. You know what it looks like and what’s leaving, and that’s what’s important.”

The hospital will call and let me know if they need to do an EKG or a chest x-ray or whatever else and will let me know what time I have to be at the hospital Monday morning. Although my surgeon said that we should go ahead and plan for between 5am and 5:30am, which I had already figured and planned on.

So that’s all done and taken care of! She said once I’m actually in surgery, it shouldn’t take more than two hours if it takes that long. She said they’re really quick. I’ll stay only one night if all goes well. But if she has to do an abdominal after all, then she said she always gives the woman the choice (if the woman is well enough) whether to spend a second night or not. I told her I screwed myself up not putting my foot down and not taking care of myself when Tayler was born and said if it came to it, I’d likely take the second night.

About a month ago, I was digging around reading about the DaVinci and ran across the HysterSisters forum. Hilarious name, but it’s a group full of wonderful people. When I first found it, I was afraid it was going to be full of sob stories about women who were afraid their lives were over because they wouldn’t be home women any more after their surgery. There’s some of that, but the rest of the group tends to stomp that out. They basically tell them to get over themselves and get on with it. There’s bunches of pre-op and post-op advice over there. It’s a great place, and I’m glad I found it. It’s so funny: they call the hospital “the castle”.

Also, for shits and giggles and fun times, I created an After Surgery Wishlist. I’ve been stuffing it full of things to both help me and keep me amused during my recovery period. It’s been successful so far. I’ve received two books and a couple other goodies.

At one point while Dr Midboe-Penn was gone from the exam room, Preston snapped a picture of me with his phone. He said I looked maniacal, but this is me blissfully happy!

mari at pre-op

wednesday was family doctor day

Yesterday morning I had to get up early to be on the 7am bus to get to Kentucky Clinic for an 8am appointment. It had originally been scheduled for about the same day in July but at 1pm, and the way our weather had been, I wasn’t going anywhere that time of day for anybody unless they were losing body parts at an alarming rate (or in case of zombie apocalypse). Neither happened, so that’s good. I just called and rescheduled the appointment, and a month later is what she had open.

One cool thing about UK Healthcare is they finally are moving to electronic records/charts/etc.  My family doctor and I got to pull up both my paper chart and my e-chart yesterday morning. Interesting read, even if we did know everything in it already. It’s neat because any department I travel to in the UK system can pull up the same chart and so have all of my information. She printed me off a summary report, and I”m going to go through it for changes/mistakes to update to take with me when I go back in December. (We both lol’d when we saw my OB/GYN team had listed “dysfunctional uterine bleeding”. I said, “Well, that’s not what I’d call it, but it fits.”)

She gave me an official diagnosis yesterday of “benign essential hypertension”, which we’d been leaning toward since I’d met her last December, anyway – and also what my therapist and OB/GYN thought. BES just means that it’s not causing symptoms or damage and that it’s more than likely come due to genetics and not because I have something that’s causing it. I asked her if I could be tested for asthma, and we ran down my symptoms – including my breathing sometimes sounding and feeling like my lungs are over-full with bendy-straws.. Right now, she’s not fiddling with my beta blocker or diuretic. Also, she said she didn’t want to fiddle around with asthma. Instead she gave me a list of OTC allergy medications to choose from, leaning toward Allegra, and said we’d work the “chronic allergies” angle for right now – after she listened to my lungs and said they were clear as a bell. She said with me having surgery (in eleven days!), she didn’t want to mess with anything just to see how I came out the other side and how I recovered. She didn’t want to add anything that might screw with that and didn’t want to increase or decrease anything for the same reason.

My blood pressure was high. It had been running lower all year. We both think that the stress of Preston being out of work, the anxiety of my surgery coming up, and genetics are at play here. She wants to see how I’m doingafter I have my hysterectomy.

I see her again around the first of December. She said, “I want you to be healed up as well as possible from your surgery before I see you again and we go any further with anything else.”

She’s wonderful. I’ve been so blessed with such a wonderful medical team at UK. I wish I could get them all together in a single room and give them all a huge, warm group huge! (and individual hugs, too!)

the two week countdown

Disclaimer: I don’t generally do disclaimers. I figure, people take me as I am or they don’t take me. But this post probably isn’t for people with weak stomachs and / or who don’t want to hear about my uterus and other girlie parts.

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The usual default response when I tell people I’m having a hysterectomy is, “Oh, I’m so sorry!” This is the response I receive from people who either don’t know me or don’t know me as well as I thought. It’s disheartening. Why? Because I thought people knew me better.

As if that weren’t enough, I also get a lot of, “Aren’t you scared?” and “You’re awfully happy.” Both of which only further my point.

I’ve said this shy of almost two years. Don’t be sorry. Be happy. I’m not in the least bit sorry or scared, and anybody who knows me knows this and knows why. Anyone who’s been following this or who’s known me even longer should know how I feel about this, what my life has been like because of it, etc and so forth. It just astounds me that anyone could follow all of this, even talk with me about it, then still be shocked that I’m so happy about it.

I’ve said this before, but I’m saying it again. This is something I’ve needed medical help with since I was thirteen. Let’s do the math. That’s thirty years of my life. Thirty years. I’ll be forty-four in February, and this mess is something I’ve lived with since March 1982. Thirty years. That’s the last five years of my childhood and all of my adulthood.

At one point when I was fourteen or fifteen, I overheard Mommy tell our neighbor I have “really heavy periods”, and she should tell my pediatrician. She followed that up with, “But I don’t know what they could do.” (Just remember, this was the early 1980s). So I thought I was stuck with it. Stuck with the overflow, the pain, the nausea, the headaches, the vomiting, the severe bloating, the diarrhea, and everything else. Some of everything else: stained sheets, stained bedclothes, stained mattresses, stained towels, stained clothes, having to have someone pick me up from school because of the mess, and so much more. People would tell me what I was going through was normal or that I was exaggerating to get attention. I damned well knew better. I knew something in my system wasn’t right. But I couldn’t find anybody who gave a damn enough to help me.

Then, when I was twenty, I got pregnant with Thomas. People plied me with all the myths about pregnancy. You’ll feel the best you’ve ever felt. Your cramps won’t be as bad after you have a child. Your periods won’t be as bad. You won’t remember any of the pain. The happiest part of those nine months (eighteen if you count Tayler as well, when I twenty-two) was that I wasn’t pouring blood and throwing up all over myself and my environment. People lie to make themselves – and you – feel better, even when all parties know it’s all bullshit.

Don’t get me wrong. I love Thomas and Tayler both beyond the darkest depths of the core of my soul. But nothing anybody told me would happen after my boys were born ever happened. Except the loving them part. I know exactly how bad my labor and delivery pains were. Tayler was a cesarean section because he was full breech and couldn’t be delivered; I’ve lived with physical and emotional pain from that for twenty-one years. It’s a blog post all by itself, and I promise one day I’ll write it. My cramps and my periods both got exponentially worse after Thomas was born then got even worse after I had Tayler.

After my boys were born, people tried to tell me, “It gets better as you get older.” It never did. It just kept getting worse and worse.

Even with all the pain I’d been through, I’d never been one of the type who go to bed with her periods. Starting somewhere in 2004 – I’m not really sure; maybe 2003 – I started being one of that type. I just couldn’t handle it any more and admitted to myself that I had to stay in bed. So I did. And I would lay there crying I hurt so bad. My periods would last seven to tend days and would overflow an OB Ultra tampon every three hours – even overnight. I didn’t know until two years ago that women aren’t supposed to bleed like that overnight, that usually the flow slows down while we sleep. Mine never have. I’ve slept with a towel for thirty years – two towels the last two years; one between my legs and a beach towel doubled beneath me (sometimes I have one beach towel above the fitted sheet and one beneath it).

Although I thought it wouldn’t help, I started keeping track of my periods on My Monthly Cycles around this time, too. I’ve always been so random, so irregular I never thought of trying to keep a record. But something told me I needed to, so I did – until April of this year. I found out my cycle was usually ten days every twenty to twenty-five days. And everyone wondered why I was chronically anemic. Go figure. Sometimes I could go thirty, thirty-five, forty days between. Thing was, I never knew if it’d b fifteen days or forty-five. I never knew if it would last four days or fifteen. Even keeping a record, I never could tell. My cycle was just that random.

In August 2010, things started getting incredibly stupid. Not only was my cycle that random, I also started having hot flashes, night sweats, and other menopause symptoms. My periods in August and September 2010 were normal for me. Except that I started going through an OB Ultra tampon once every two hours. In October, I had two that lasted four days each and were separated by twenty days. Twenty days later, I had another that lasted four days.

I didn’t start again until December 30, forty-five days later. I didn’t stop until January 14. I had a three day respite, then bled for two days, then had a nine day respite. I started again on the twenty-seventh and didn’t stop until the fifth. I stopped for twelve days. My record for February through June 2011 is just ridiculous. With the exception of five days, I bled all through the month of May. The entire month.

January 26 (2011), while I was doing laundry, I stood up to check a dryer, and blood went everywhere. Our laundry is about one football field minus the end zones from our apartment. I’ve had bad blowouts since I was thirteen, at school even; I’d gotten used that when I’d rise from sitting or lying, I’d flow like Niagara. This was normal. Gods forbid I sneeze. But to have this happen where I had to walk home? I was humiliated. And my son Thomas still lived with us at the time and was home, and I had to yell from the front door for him to shut his bedroom door so I could get to my bathroom. A truewalk of shame. That day and the day before, I was changing tampons every forty-five minutes.

The next afternoon is when Preston and I went to the emergency room at UK to see what was going on before I bled to death. I outlined all of this in this post. The doctor prescribed a week’s worth of Provera, which seemed to help. It slowed me down, but it didn’t stop. I still spotted and threw enormous blood clots. I saw a wonderful OB/GYN on February 23 – the soonest I could get in. She and I discussed hysterectomy, and after I left a blood clot bigger than my hand on her exam room floor and blood all over the exam table, she wouldn’t let me leave without a Mirena.

Also – and I don’t think I recorded this anywhere – I found out at least part of why I bleed like I do. My cervix stays dilated. Because of this and my heavy flow, my OB/GYN wasn’t sure the Mirena would stay in place. She expected me to be back in her exam room in a week saying the device had been lost. My cervix stays dilated about the size of my pinky finger. That’s just shy of one centimeter. This explains a hell of a whole lot, I think.

I guess the Mirena did its job in June and July, right up to August 6. I started a twelve day period. A week later, I started a thirteen day period. The blessing to this was that I was able to use Kotex regular tampons and a pantyliner. I’d neverused regular tampons in my life. Going to buy them was a whole new experience for me.

Then October was all over the map. Two days, three days, four, five. And not necessarily in that order. November was much the same, and I got really discouraged. But then I didn’t have a period from November 30 through December 27. Then I bled through almost all of January. Again. I had a thirty-three day break from January 29 to February 23. After that, everything went to hell in a hand basket. But I was depressed, in denial, and didn’t want to deal with it. I put off seeing my wonderful doctor until April. She just looked at me and said, “I think that big fat thing just wants to come out,” and sent me down the hall to talk with the woman who would become half of my surgery team.

So. That’s all of that. Again.

I went over most of this in my original post early last year. And have discussed this over and over again.

Yet people still come to me whether in person, on the phone, in texts, or online and tell me, “I’m so sorry,” because I have to have a hysterectomy!?

I just don’t get it. I mean, in a way, I do. But in that way, it’s as maddening as it is distressing. If you know me, you know what a blessing this is! You know how miserable my life has been. Thank the gods and all that’s holy I have an OB/GYN who stresses quality of life over quantity.

See, I’ve never defined who I am by what’s inside or what’s outside of my body. I know women who do. They base their self-esteem and their identity on the size of their breasts, the flatness of their stomachs, the organs between their legs, and their ability to deliver litters of children. I don’t understand them. That’s one mentality that’s never made sense to me.

We’re all so much more than the sum of our parts.

Now some of you are thinking, “Weren’t you anorexic through your teens?” Yes. Yes, I was. But for me, that was less of a self-esteem/identity issue and more of a “If I stop eating and eventually just disappear into the ethers, no one will ever notice or care anyway” issue. Some won’t/don’t recognize a difference there. My therapist and I do. The people who know me do. The people who matter do.

These same people who understand my past anorexia also understand why I’ve begged and pleased for thirty years to get rid of this horrible thing that’s done nothing but wreck my life and my body and my mind; this thing has damaged both my physical and psychological health.

Yet people want to know why I’m happy to get rid of it.

The other day, I was sitting here talking to Preston about all of this. He looked at me and asked, “Are you okay? You have big fat tears in your eyes.” I giggled. I said, “I’m happy. No. I’m relieved. When I wake up later in the day on the twentieth, all of this will be over. Over. This thing in my body will be gone, and all of this pain and bleeding and bullshit will be over!” So I sat there and allowed myself to be happy and relieved and to cry all those happy tears! Preston thought I’d gone hysterical (no pun intended there). But he joined me. He’s happy and relieved for me that all of this is going away.

And he’s happy and relieved for himself that all of this is going away!

My therapist and I have discussed since April how this is going to affect my psychological health once the surgery is all healed. (I’m having a da Vinci hysterectomy. It looks cool as all hell!) I’ve sat here writing these last few paragraphs and having to stop because I can’t see to write through my tears. As rotten as this thing has made me feel for three-quarters of my life, I’m ecstatically happy and blessed and grateful for the surgery. I want to kiss my OB/GYN and both of my surgeons on the mouth for giving me this. (I’ll send them nice thank you cards later!)

I’ve bled pretty much constantly since the middle of April. No breaks. I’ve not been able to get into the pool all summer or take walks or much anything else. Over the course of July, things got bad again. I’m bleeding around the clock with no let up. I’m also overflowing again. The only difference between today and two years ago is that instead using the OB Ultra tampons and a Kotex maxi pad (and still flooding like Niagara every forty-five minutes), I’m soaking a Kotex regular tampon and a Carefree pantyliner once every four hours. I have endless gratitude for my Mirena for that. It may not have done what my OB/GYN and I hoped it would, but it gave me some relief that I hadn’t had before I got it. A blessing all its own. I hate to think what I’d be like without it.

So. I said all of that so I can say this.

Don’t feel sorry for me, people. Please. Be happy with me!

You’ve not lived inside my mind and body. I’ve had no choice. This surgery is a wonderful, blessed thing, and I want to sing my happiness from the rooftops! Be grateful along with me that I’m finally getting somereal relief and some freedom and some peace in my life after thirty years of misery. Things I’ve never had in full.

When I wake up August 20, my health, my life, is going to be a new place. To know I can sleep through the night on clean, stain-free sheets without worrying I’ll wake up in a pool of my own blood. To know I won’t have to sleep with a two beach towels beneath me and a bath towel between my legs. To know I can leave the house without needing to fill my handbag with panties, tampons, liners, and plastic storage bags. To know I can leave the house without worrying I’ll bleed all over myself while I’m gone. To know I can buy panties and know they won’t be ruined with blood stains in a couple of months. To know I’ll be able to sit down and not have to worry I’m going to bleed all over everything.

And so, so much more.

So much more.

I know most of you can’t begin to indulge the weight that’s gone from my shoulders, from my psyche already. I can’t begin to describe it. Tremendous, tremendous relief. Gratitude. Joy. I don’t have enough words, phrases, or expressions proper enough to come even somewhat close to what I already feel.

I see my family doctor August 8 for a follow-up from the last time I saw her in early January. I can’t wait to tell her about my surgery!

I see Dr Penn, the main half of my surgical team, for my pre-op August 14. Preston is going with me, my advocate, so he can be there when she tells me what ll we need to do before and after, what happens during, and while I sign all the paperwork. I carry a notebook to all of my appointments, but I know it will help Preston (and me) if he’s there with me through all of this. After I see Dr Penn, then I wait six more days.

My will, my living will, and my house are all in order.

When I wake up August 20, it will all be over.

 august calendar