Annus Medicus Horribilis: Quasi-Amazing: Difference a Day Makes

Being in chronic pain just grinds away at you, and can turn you into someone you hardly recognize as your SELF. After the summer I've had of non-stop medical drama, mess, disappointment, existential angst, and outright active, debilitating pain, I'm hoping today's the precipice of the tipping point, and (dare I say) hoping things are going to start to improve (at least until my next menses hits).  

Last night I went out to knit night with my friends, even against that inner voice saying not to. Not because I do not enjoy their company (which I do enjoy, immensely), but because I've been ground down to the point where I felt like I had nothing to give and nothing to gain from going, and of course, because I've been (perhaps justifiably so) a whiny bitch lately. So I went. And I'm glad I did. I'm glad because it felt good to be with friends. 

Humans are social creatures, even the most antisocial of us need human interaction. We're HUMAN. We laughed. Exchanged info. And in the course of chatting, I had an epiphany of sorts. And perhaps this epiphany is just enough to keep me from entering a realm I haven't wanted to enter: feeling sorry for myself. Feeling sorry for myself is an easy enough trap to find myself. 

Afterall, I finally did something proactive about losing weight and getting healthy, and get healthy enough to attempt to conceive. And while I liken this process I've gone thru to someone training for a Couch-to-5K, only to realize they overslept or the big race was cancelled.

So I've spent the summer feeling as if all of this effort was pointless, given the nature of the path my life has taken. Like why did I radically alter my body and my life, if the reason I did so isn't a driving force anymore? For weeks I've been thinking about the Big M (menopause) and how it waits for every woman, and thinking about how I can have a different peri and post-menopausal experience/narrative than my mother. 

Hells-bells! Losing a lot of weight goes a long way towards working towards the goal of having as stable or uneventful menopausal experience possible, and hopefully also ensures I'll be a lot happier and healthier and more mobile experience for the second half of my life. So last night during knit night, I had that a-HA! moment, where I connected those dots, and all that work and effort isn't pointless after all. However, the pointlessness of my very existence is always debatable at this point! At least all my hard work thus far hasn't been for naught. 

It's been a tough summer, and very hard for me to make any sense out of what I'm going thru at all. So at least I'm able to see some positivity in this. And I think today is the first day where I can say I see a marked change in the "blood situation." But then again, my uterus has a mind of its own. So who knows if I'll end up having to go home today to change my clothes. Because yes, I felt well enough and dared enough to wear light colored pants today.

Weight Loss Chronicles: Update on my Supplements

Looking over my archives, I wanted to see my inventory of supplements I'm taking. Here's the link to the last inventory I did.

Here's my current inventory: (This first group I take first thing in the a.m. with a hot cup of coffee): 

Magnesium 400 mg (1-2x daily) 
Omega-3 1400 mg (1x) 
Evening Primrose Oil 1000 mg (1x) 
Alpha Lipoic Acid 250 mg, 2x daily
Colace 200 mg (1x) 
2 Gummy VitaFusion Prenatal Multivitamins
2 Gummy VitaFusion Sugar Free Fiber Chews, 5 gm, 1x 

Then throughout the day I manage to get these in:

D3 2000 IU (1x)
Calcium Citrate, 250 mg (4x) 
Zinc (dosage I cannot recall at the moment) 
CoQ10 (50 mg, though I'm thinking of boosting this) 
Hyaluronic Acid capsule 1x (100 mg) 
Feosol 325 (2 tablets) 
Vitamin C, 500 mg, 1x 
Apple Cider Vinegar capsule 
KAL brand B12 spray (1-2 blasts under the tongue)

Melatonin Chronicles: Day 11

So far it seems to be helping me doze off. I've been trying to get out of my habit of sitting in front of the computer in the evenings to try not to "energize" my brain. I still watch t.v. in the evenings w/the husband. Once he goes to bed, I usually watch a little more t.v. Since I've been dosing with melatonin, I find I've been falling asleep in front of the tube. And I usually end up getting up about midnight to turn out the lights, brush my teeth and head to bed. Last night was the first night in a long while I've had a trippy dream. And today when I woke up, I am groggy and foggy headed. Not sure if that's due to melatonin, my depression, or something else. Tonight is my knit night, so I'm looking forward to that. And hoping, of course, I'll have something interesting to say/share with my two friends. Last thing I want to be is a "Debbie Downer." It's been a rough summer. I feel like I've aged 10 years in the last three months.

In Too Deep, I Suppose

(FB Status update just now) 
I know I'm in this funk a bit too deep when I misread (after blinking several times, mind you) the word INTERFILE, and *thought* I was reading the word INFERTILE. Can I go home now? Like forever? ETA: I removed this from FB, as I felt like a whiny bitch after posting it. And at the moment, I cannot decipher support or empathy from outright pity. So read my whiny bitching here, folks. Good times. Pain: Vacillating between a 3-4. Friday's pain: 6-7 agonizing (yep, still room for MORE PAIN, and still agonizing.)

Hysteria

Yeah. It's not really funny.

Annus Medicus Horribilis: Reply From the Gyno

So I got replies from the gyno (surgeon) regarding my expectations after the ablation. He tells me that the first menses after the surgery is heavy, but things will gradually normalize thereafter. I'm in a considerable amount of debilitating pain (and it's really grinding on me). He wants me to come into the office for an exam and "to talk." What's there to talk about? There's nothing that can be done... well, beyond the BIG H, which I do not want. I cannot even process that at the moment. 

He tells me other than just "time" he could put me on birth control pills. And my inner bitch really stifled itself at the mere suggestion of the birth control pills, because fuck me running, if I didn't have a blood clotting disorder that puts me at a higher risk for clots and stroke, and if I didn't have elevated cortisol issues which could potentially lead me to clots or stroke, FUCK YEAH, I would have taken the pill rather than totally, irreversibly put the kibosh on what little is left of my fertility, all for the hope of a pay out of no more debilitating pain. So why waste his time and mine to discuss what, exactly? Birth control pills I cannot go on, or hysterectomy which is something I want to avoid outright? I was hoping the ablation would buy me some time until I hit menopause, so then hopefully I could avoid having a hysterectomy. 

Since my gastric bypass, I have had more than my fair share of fecal impactions and constipation issues, and I fear that having a hysterectomy will just exacerbate that. Also the potential for prolapsing my bowels thru my vagina is a big deterrent, plus painful sex or a diminished drive or having some other sexual dysfunction is a concern, too. So that's that. No plan for pain management. I've got tramadol from my internist, which barely blunts the pain. I took one on Friday and I still managed to leave the office early due to agony. The only thing that blunts it enough is the occasional cocktail and using my TENS unit at home. This is not how I want to live my life. So, I'm done talking to friends about it. I'm sure I've worn out my welcome and have exceeded the acceptable level of hand holding I can expect from friends. So I'm going dark. No more discussing it (on FB or in personal conversations). I'll unload here or on my therapist, and that's that. And just suffer in silence. With any luck I'll just die in my sleep.

Melatonin Chronicles: Day 8

Was a bit anxious about missing a dose (like I did Sunday and ended up awake until 3 a.m. Monday a.m.), so I took a full dose, 3 mg about 9:30. Finally got groggy enough to get to bed by 11, and don't remember much more than that. Didn't take long before I fell asleep, and from what I can recall, I did not wake up with a START like I normally do. I think I slept straight thru until about 7:45, but I did not want to get out of bed. Hard to live like this. Either the physical drain is draining me, or the emotional depression is draining me. I just want to stay home in my safe cocoon and putter around the house. I hate people, and I really have nothing productive to offer at work. I'm distracted and in pain. Bossman just asked how I was doing, as I was pretty much destroyed by pain (and disappointment) on Friday. I replied, "Better than Friday, but still shitty." 12:01 p.m., and gritting my teeth until it's six p.m., which cannot come fast enough.

Today's Birthday Gift

During today's session with the therapist, he told me he thought I was handling everything very well, and even said it was inspirational. I'll tell you what, it doesn't feel like it's very inspirational. He ended the session with "Keep doing what you're doing. You're experiencing a death. Take as much time as you need." 

But I know grief well. I'm grief's bitch. I know that I'll never get rid of it, it'll blunt the edges a bit just enough for me to be sucker punched at a time when I think I've moved beyond it.

It's always going to be there like an anchor.

Plans Aborted: Part Deux

To recap, I left work early on Friday as a result of (what shall I say here? debilitating? agonizing?) pain.

My plans for attending a craft show (to see my dad's elder sister, who I rarely see) shit the bed.
My plans for hosting a luncheon for my brother-from-an-Indian-mother, shit the bed.

And here I am, it's Monday, and had a full day's activities planned in NYC (after a therapist appt), and these plans, too, have shit the bed.

Waiting to do what will end up being a phone-in session with the therapist, an ironic one, given that my surgical procedure was supposed to or promised to change my pain paradigm, and since it hasn't it's negatively impacted my ability to go in for a therapist appt, to discuss why it cannot be an in person therapist appt.

It's kinda like the Inception of Suckitude actually.

Dropped the husband off at the train, and did a minimum of grocery shopping. Put up my steaks to dry age, got myself in the shower, and hoping I'll compose my thoughts enough to have a productive session with my therapist.

Mood: Pensive. Anxious. Depressed. Bleak.

Happy motherfucking birthday to me.

What's Stunning

...Is the lack of support.

There's a hierarchy of sympathy and it goes thusly:

If your parent dies, most folks can either empathize or relate to that loss, and sympathize accordingly.
Same thing goes for your spouse, or sibling.
Even more so if you have a kid.
And when your baby dies, some folks are a bit weird, but still forthcoming with sympathy.
Less so if you miscarry. Enter the realm of awkwardness.
And well, for the rest of us who have to suffer the loss of the possibility, the loss of our fertility... well fuck us. We have to suffer in silence.

At work I've taken the tack of no longer giving out my smiles for free. Hey after all, it doesn't get me anywhere, and really the folks I'd be dispensing smiles to haven't done jack shit for me in 11 years of working there*. I even went so far as to say to someone recently when they remarked the lack of smiles, "Hey, why should I smile? What have YOU done for ME lately?"

And really, I've reached that point where I'm separating the chaff from the wheat and really realizing who my friends are. And no, my friends aren't the ones with whom I've spent countless hours helping thru whatever their drama du jour is. My friends are the ones who SEE AND KNOW what's going on with me and they reach out to me, privately to let me know I'm loved and they wish they could help.  Even outright strangers on the net, folks I've befriended and never met or only met once... those are the ones who have reached out. (And of course friends I've had for 30+ years). 

I cannot help but look at my friends list on FB and see 250+ people and it's appalling, the paucity of support. Been thinking about deactivating my account, maybe temporarily, maybe permanently, in response to it. But FB does serve a purpose while I'm at work and it passes the time. But it is also a reminder of who responds to what type of posts I post. WTF and crazy shit? Yeah. Folks come out of the woodwork. I'm destashing shit or posting a picture? Yeah, same folks come out of the woodwork with their hand out for my stuff or a recipe. But to be PRESENT? And compassionate?  Fuck that. 

I'm flailing. I know. And I'm angry and depressed and disappointed in a good lot of things this summer.

I just wish I'd die, to be honest.

*ETA 2/12/19 Nearing 17 years of being here and not a god damned thing has changed in this office, and in some respects, things have degraded FURTHER. 

End of the Future. Must Stay Grounded In The Present

So cleaning out the bathroom drawers and found this EPT whose services, obviously, are no longer required in this household.

Hard not to get emotional about it, when I"m experiencing moderate to intense, active pain. Hard not to get emotional about it, when my own actions having the ablation and to be responsible, having the tubal ligation after, have pretty much sealed my fate.

Hard to think I went my whole life thinking motherhood would find me, only to realize that bitch was never out looking for me. 

Hard to think that the life I thought I'd live isn't what I"m living.

Hard to deal with all of this knowing my dad's not here to hold my hand and if need be, cry right along with me. The loss of him signifies the loss of my past. And the loss of the possibility of having a child of my own, signifies the loss of my future. This all leaves me no recourse but to live in the moment. But what is left for me in the time I have left before I pass? A few more inane spats with my husband? A few more good meals? A few more vacations? A few more laughs or tears? Surely that's not IT, is it?

Mood: Melancholy and bleak.

Plans Aborted

I was really hoping that the ablation would help alleviate the excrutiating menses pain and adenomyosis pain I experience.

For the last 24 days, I haven't stopped bleeding, and I believe my actual menses started yesterday. The pain yesterday was moderate, and today's pain has been nothing short of "exquisite." Left work early today as a result, and pretty much have been curled up in a ball most of the afternoon, making noises that only dogs or dolphins can decipher, and overall hating life.

I'm beyond disappointed. I was hoping to no longer be a prisoner to my pain. I had plans for tomorrow and Sunday, both of which I've cancelled as I don't anticipate this changing anytime in the short term. And I have plans for Monday, my birthday, and the jury is still out on whether or not I'll be able to do what I need to do, much less do what I WANT to do on my birthday.

Husband left work early and came home, with a bag of dinner in hand, and immediately set about trying to do what he could to make me feel better. I'd be lost without him.

Onset to Onset: 23 Days

23 days since ablation & tubal ligation. 23 days of medium-to-light (and back to medium) flow. 23 days, onset day to onset day. Tradmadol ingested one hour ago. Fuck me running, status quo has been maintained (or one could argue that it's WORSE, given I've been bleeding nonstop for 23 days). But I guess bleeding = the blood is coming out and not building up in utero or in the fallopian tubes, so perhaps there's a chance I won't suffer from some post-ablation syndrome weight gain. Here's hoping. But still? I'm fucked no matter how you slice it.

Weight Loss Chronicles: 2 years and 8 months post-op

I have not lost one single pound since January 2012. Devastating when you think of it. It's not for lack of trying (well, other than I am not in a regular excercise routine), as I am pretty diligent about packing my feed bag for work, and staying compliant with my protein intake, supplements, and adhering rigidly to the 30 minute wait time after eating solids before transitioning back to liquids. Perhaps this is the cortisol talking. Perhaps. I'm hoping that the melatonin supplement I'm taking will get me back on the right track. Get me in a good sleep habit, and break my habit of pulling all nighters, being up until 2 or 3 a.m., and of course having 1-2 more feeds in the process. Hopefully more sleep (and more restful sleep) will = less calories consumed and = more weight lost. Well, you know what Ben Franklin says about people who hope, right? (they die farting.)

Not to be Remiss: Ablation

So it is now three weeks to the day since I had uterine ablation and my tubal ligation. Still too soon to tell if the ablation is going to help me at all. I was under the impression that it would help my symptoms. I was also under the assumption that afer a few days to the first weeks, I'd experience a "watery" discharge. Well, there's nothing watery about it. What drove me to have the procedure was the unrelenting agonizing menses pain and excessive flow. Well, I went from losing a few days to one full week of my life to menses, to what appears to be three weeks of flow. Granted, it's on the light side, but I'm still wary of wearing light colored clothing. So here I am. August. And I'm wearing black. So really, from my point of view, no change in my status quo. Also? Yeah. Good times. I'm no doubt ovulating this week, which means, no rest for the wicked. That if by some weird fucked up stroke of luck my flow finally subsides, next week it'll start back up again as my regularly scheduled menses. So all this is to say, that I'm regretting it all. At least before my procedure I could delude myself into thinking I didn't have kids because of fertility issues and now I"m too told to do anything about it and had the tubal to prevent what could be a life threatening pregnancy (if I were to become pregnant). The rub, bub? Yeah. Since I have't had one single day without blood, yeah, I haven't felt like having sexy times. And at this rate, wondering if I ever will. Between this and the unabated elevated cortisol issues making me cranky and wound up tighter than a fucking top, yeah. I'll be so fucking glad when this horrible summer is over. But that won't happen until after I turn 45. One more good time to be had. A reminder of me losing one more year to fucked up genetics, fucked up fertility, and living a life that has been so fucking convoluted and NOT what I ever dreamed my life would be. Signing off for now. Color me: Blue. Blue as in blue haired old biddy, Get the fuck off my lawn you hooligan. I don't feel like myself and wondering if/when I ever will again. Whatever that means.

Melatonin Chronicles, Days 1 & 2

Sunday night I started self medicating with melatonin, to try to reverse or change my cortisol levels. Sunday night's dose was 3 mg, and I got to sleep okay, and woke up okay, a bit groggy but okay. But I still needed the assistance of either the alarm or my husband to wake me up. Half dosed last night (1.5 mg). Got to sleep around 10:30-11 p.m. despite another pre-sleep accidental tickling. Got up 6:45, no alarm. Got out of bed 7:15 since I couldn't go back to sleep. I puttered around doing housework etc, before getting ready for work. 

I heard back from my ReproEndoGuy re: the melatonin, and he thinks I might benefit from it. But I want him to run a baseline on me (of all three, cortisol, DHEA, and melatonin) so I can monitor any change or progress for three months of dosing. I might switch to a lower dose melatonin to see how little I can get by using. And will be tracking my progress via that spreadsheet I alluded to in my previous post. Here's hoping I don't lose my formatting like yesterday. I just could give a shit less about going backwards to reformat my posts.

Email Sent to ReproEndoGuy and RenalGuy

The following is the body of an email I sent to my endocrinologist and my neprhologist in regards to my elevated cortisol: 

I’m going to organize a spreadsheet so I can get an idea of the changes in my DHEA and my cortisol levels. Would you be interested in reviewing this spreadsheet? If so, is there any other item you’d like to see tracked on this spreadsheet? 

For years* My DHEA has been excessively high (*10+ thereabouts, though, I only have on hand blood reports dating back to 2006 (I’m sure I’ve got earlier blood test results at home, just misplaced/MIA at the moment), and since my weight loss surgery in 2011, the DHEA has lowered, yet the cortisol is now spiking. 

What little I have read about DHEA and cortisol, they emanate from the same area of the adrenals, and I wonder if there is a connection? I have three major concerns regarding my cortisol:

1. I do not want to be a “nervous Nellie” of a patient; however, I have made considerable progress with my weight loss surgery, and do not want the elevated cortisol to undermine my progress. To date, I have not lost any weight since January 2012, and I am now 2 years and 7 months post-op.

2. I am also concerned about my blood pressure, which remains on the high side, despite my dosage of Quinipril being upped to 40 mg 1x daily. 

3. Sleep. Prior to my WLS in 2011, I had been using a CPAP for apnea and discontinued using it as I was not convinced I was getting any benefit. Weight loss notwithstanding, my sleep continues to be a big issue. Not only do I have problems falling asleep, but I also have problems MAINTAINING sleep. I wake up several times a night. 

Unrelated, I have been having palpitations or possibly anxiety/panic attacks occasionally, and not sure if this is related. Is there some dietary supplement (i.e. Relora?) from which I might derive some benefit? I’m curious about what the next step will be in solving this mystery.
 ### 

In the meantime I'm debating sending a note to endo guy to see if they can test my melatonin, cortisol and DHEA regularly to monitor this. I took melatonin last night (3 mg) and managed to get to bed by 11, and I think I remained asleep until 7:45 this a.m. Don't want to get in the habit of using this until I get a baseline for my melatonin to see if that's the key to unlock what's wrong w/the cortisol.

Two Week Follow Up, Thereabouts

Had uterine ablation and tubal ligation on 7/23. So far so good, though I'm still a bit unimpressed. Surgical procedures were fine and came with it the predictable discomfort from, at least, the laproscopic portion of the procedures. And here it is, about 11 days later, and it appears as if my period has not stopped. It's not mere discharge. I cannot go without wearing a pad. And this has me depressed and wondering if this procedure is going to help me in the long run. 

Saw the surgeon on 7/31 for the post-surgical follow up, and he said that all seems well, and he didn't want to see me for another year. Though did make mention that with my adenomyosis, uterine ablation aside, I still could have between period spotting. I've been reading up on the topic and I guess this current "spotting" (subtext: NEVER ENDING PERIOD) might abate after about 4-5 weeks. I'm just hoping that things even out thereafter and I won't have to worry about a hysterectomy. Just trying to bide my time for the next 5-7 years until menopause hits. I really, really want to keep my uterus (for structural reasons, as I don't need more difficulties in the bathroom than I currently have).

I don't feel 100%, despite getting a return to work letter for 8/1. Mentally I'm drained today, and have a birthday BBQ to go to, which I *am* looking forward to, but at this very moment, I'm struggling with myself to get showered up and out the house and be in a festive mood, when really for the first time in 11 days, I just feel like crying. 

I'm hoping I'll feel better once I'm showered up and dressed, and I guess if I am still not feeling 100% while at the party, I can excuse myself.  I baked a special cake for the day and hope it's as delicious as I expect it to be. 

If it's not my pain debilitating me and keeping me from DOING THINGS, then it's my depression sucker punching me when I least expect it.

PS: My mother knows about the procedures, which by extension means my sister knows. And I haven't gotten so much as a text, email, or call from her to see how I am doing. I guess it's my punishment for not going to my niece's graduation party (graduation from ELEMENTARY school, btw) a few weeks back. Folks fail to realize how debilitating pain and depression can be, and fail to remember that if I do go to family functions it's normally done solo. But hey, let's vilify and punish me because I married a man who refuses to play my family's passive aggressive games. It just perpetuates the loss of my dad, and the feelings I have that God and family have forsaken me.

*SIGH.*

Off to shower I go, and hoping for the very best for today, and hoping my friend's birthday barbeque is a lovely, enjoyable affair for everyone.