Across and Inside my Universe

It Could Be Alot Worse

I'm having some anxiety over my mammogram results, but it could be much worse.  So, I had my first baseline set May 13th; they wanted me back for a closer look at one, which they told me was pretty common as when they have no baseline to compare to they need to nail down the particulars of various structures, like lymph nodes in weird places or whatever.

Due to various things like vacation, forgetting, and such, I didn't get back for my followup mammograms until today.  After the mammograms, they made me sit around for a long time, and eventually ultrasounded me trying to see what they are trying to nail down, that way.  However, neither the ultrasound tech nor the radiologist doctor could find it.

The doctor told me that "it looks benign" and that "it is probably a lymph node".  Then he said, "We need to see you back in six months, to see if it has grown.".  

Urgh . . .  that doesn't sound like a lymph node?

However, I get the impression that this is MOSTLY a dot your i's and cross your t's situation; that there is a slight possibility it could be something that grows, and is/becomes a problem, but that the probability is so low they are not even needing to look at it for half a year.  No one actually came out and SAID these things though, but it's kind of what I gathered from how they were and what they said.

Still, I've also gathered that there is a possibility it COULD be something bad; they don't just shoot you with x-rays for the fun of it.

My grandmother had breast cancer twice, however, it was not premenopausal, and her five daughters, most in their 70's, have not gotten breast cancer, and none of their female children have gotten it either as far as I know.    

It has also been close to two months since the initial mammogram; yes, they needed a closer look, but they probably have an idea of size from May to compare it to (maybe they don't, but the thought is comforting, and it doesn't hurt anything to think it) and they didn't say that it had grown or anything . . .

So, I am doing some CBT to try and calm down a bit, but this is something that is there, in the back of your mind . . . 

I DID ask the doctor where the 5mm oval . . . white splotch/lymph node . . . that we can see on the mammogram was; they took some funky angled mammograms, so seeing the images wasn't necessarily showing me where it was because I didn't know the angle/frame of reference.  Not more than a very rough idea.  He told me where it was, but he also said I'd not be able to feel it.  I responded by saying I figured breast self-exams weren't a bad idea anyway, and didn't say more, knowing it'll help MY peace of mind to know where a lump MIGHT possibly show up, if this . . .  splotch/lymph node thing isn't a lymph node and isn't benign.  

See, just KNOWING this information, makes me feel less helpless, and like there is something I can DO, aside from just waiting six months and going in for the next mammogram and/or ultrasound . . . perhaps these things are so unlikely to be bad that aside from practical experience and getting more familiar with how things feel WITHOUT lumps in them, it is not likely to help me find anything where the splotch is, but it sure helps me out psychologically . . . so I'll take it.  Knowing more just . . . I don't know, it helps.  I think sometimes too much info can be too much, but at this point, I'm glad I thought to ask things that make ME feel more in control, even if that control is an illusion . . .

Gee, I may be talking myself into a hole about this; I'm already poorly enough off in so many other ways, emotionally, right now.  Well, at least I can feel good about having gone and dealt with this, which I really hadn't wanted to do . . .

Unsafe

Well, I'm not safe.

Lability is uncomfortably high (I hope I'm using the term correctly).  My state of mind, my emotional perspective, keeps shifting so much that any decision I make, even fully believing and commiting to it, I can be doing just the opposite five minutes later (or half an hour, hour, etc.).  The place from which I am interacting with the world from, feels as though it's on a mess of shifting tides and currents.

Part of me thinks, well, isn't this just weakness of character, not being able to stick to anything or operate from a stable state of self or being or mind or whatever?  That word, stable, though, is part of the key.  The whole shifting currents thing, is another.  I'm NOT STABLE right now; I'd not call myself UNstable in a crazy, psychotic way, but  . .. well, basically what I've described above.

It is tempting to fall into the trap of thinking, hey, since I'm seeing this problem, and acknowledging it, doesn't that mean I'm functioning well enough to be or feel safe?  I've fallen into that trap before.  While identifying this stuff, prioritizing it, taking some actions with it, etc. are positive and functional, healthy things, the very nature of being so . . . well, volatile isn't quite the right word, I'm not going to lash out in an extreme way (although I guess suicide and other things actually are pretty extreme) at anyone else (hrm, I've been highly irritable and rather snappish, which I've been not pleased to have acted out as much as has been, the last few days; it has been uncharacteristically frequent and drop of the hat.)  I've been quite reactive and on a short fuse, not even necessarily being aware of having a short fuse, until I snap at my husband.

I've been irritable and snappish before, without the high lability; mixed states suck.  There is more here than just that, although mania and depression certainly make matters rather worse . . . 

I have therapy tomorrow, and I don't know if my psychologist will recommend the hospital.  We've already taken some familiar and not so familiar steps, around here.  Any excess medication my husband has hidden.  A step taken once before, for a time, that I've asked of him again, is to not leave me alone at home for three hour+ stretches.  Two hours feels like it'd be kind of rushed for anything extreme, but that may be because I'm particular.  I hate to scare him like this, but on the other hand it feels the responsible thing to do.

So, he may need to stay home from church on Sunday.  This would carry us to next Wednesday, when I'll be home alone for most of the rest of the week.  If I am still highly changeable/feel like my behavior could turn 180 in the blink of an eye/feel like my mania or mixed state or whatnot is pushing me to danger, then we'll have to probably hospitalize me or figure something else out.  I am REALLY hoping that I'm not like this, then.  It usually has only ever lasted a few days, 3 or 4 tops, but I had this a week to 10 days ago for 4 days or so, and now again and it's just rather scary.

I dunno, maybe I'm a wuss and not taking responsibility, when I say that I can't seem to be able to say that what I decide right now will be the place from whence I could reasonably still be operating an hour from now, etc.

The pull to reckless and harmful, serious things of a variety of types is strong, although I am currently fighting them.  Some things you can't come back from, and some you maybe  shouldn't (okay, definitely stuff to bring it up tomorrow in therapy.)

Edit:  This talk of lability, and danger, and unsafeness, and my assessments thereof, are based mainly on how my psychologist has assessed me most recently last week when discussing the same kinds of things, as well as in the past, the few other times that it has been this bad (all since early 2012, really).  Things I'm saying here are based on concerns he's discussed with me about my safety and stability and such when I'm in this/these states, having experiences as I've been this week and being all over the place, and stuff.  My safety has been a major issue and concern to him, in many of the ways I posted about here, and some things I haven't posted.

Edit:  Also, I do have upcoming appointments with my psychiatrist, later this month and then in August as well, since my urologist cleared me for going back on psych meds/back to the psychiatrist (I know one doesn't necessarily mean the other but he has pronounced my kidneys fine, after a CT and a cessation of the most distressing symptoms . . well, I may need to check one more thing with him, but he did clear me.)  Still, I may be contacting her sooner, by email I guess, if my psychologist thinks I need to go to the hospital.  Maybe her emergency nmber would be better, I don't know?  I' ve left a message on there before.

Do What Hurts the Most to Improve What Hurts the Most

Or:

No pain, no gain.

That's a little black and white, but since running from pain is what I do best, learning to just sit with my pain, heck, learning to recognize when what I'm doing is a defense or running from pain, is pretty much where I'm at alot of the time.  Yes, even after all these years of therapy.  I was sooo un-self-aware back then, and therapy's helped me alot through the years, subjective though my opinion might be.

So, to improve in areas where you social anxiety bell starts ringing, you need to at least approach that bell and face some of your fear, and learn that you can deal with that situation, without retreating, in order to make gains in that area.

Sounds so simple, doesn't it?

When spelled out intellectually like that, it does, but feeling it is quite intense and often difficult.  Still, I've gained some sense of efficacy in some areas I needed improvement in; oh, how many more there are!  

A month ago, when my husband started physical therapy after his arthroscopic shoulder surgery, I went with him and saw the therapist who'd been my physical therapist several years ago.  He's the owner of the place, so quite capable (or seemed so to me).

He asked after my recovery, and was unpleasantly surprised/startled to find that my total knee replacement recoveries have turned out so poorly.  He kind of quietly threw out there that perhaps some strengthening, exercises and such, could do improve things quite a bit, if not solve the problems entirely.  He expressed his sadness that I was in such lasting pain and again seemed to think that improving strength would help.

I found myself out of sorts after hearing this, and as I lay in bed that night I realized, "He's saying that I don't have to be in pain; that there is something I can DO about it."  I felt anger, because how does he know I haven't worked hard?  I have.  I felt frustrated, that he would just assume that something COULD be done, because I've had to come to terms with being in pain alot.  I felt anger that he was dangling no or less pain in front of me, if only I would CHOOSE it, the implication being that if there was something I could do to improve my situation and I didn't, then I was CHOOSING to be in pain (or at least, in as much pain as I am).  I did realize eventually however that most of this was how I felt upon hearing or pondering what hea said, and wasn't necessarily what he said, or meant.

I chose, last week, to get over myself and have my husband ask him what I could do (the holiday being kind of nuts, I couldn't make it to many of his physical therapy appointments, although I could have done better than I did).  Why let pride stand in the way of possible improvement?

What the physical therapist suggested is standing up and down out of a chair, like I used to do at physical therapy and at home during recovery, using legs only no pushing up on the arms of the chair with my hands, etc.  He also said I can use a pillow in the chair if I can't stand up without using my arms without it.  To that I thought, "What, does he think i'm THAT weak?"  I can actually stand up from a crouch now, and it was less than a year ago when I couldn't do that; I'd gotten in a crouch and was stuck (it felt like I had no way to make myself fall over either, weird as that sounds, so I could get up from there, so I felt trapped and feared getting in a crouch again).

However, a week or two ago I crouched without thinking about it, and got out of it myself (with agonizing pain, naturally, but still I did it.)

So, I'm going to start doing three sets of 10 of these, several times a day, with a day off in between here and there, as when you are strength training I know the muscles sometimes need time to build back up.  Or something.

I've got an office-style chair that I can and do usually keep set really low.

The thing is, standing up without any assistance from my arms, or from setting my legs farther apart, has the pain hitting a level 7 during the whole muscle-pushing process.  Level 7 is alot.  So, to stand there and do it ten times in a row, rest for a minute or two, do ten more, rest, and 10 more . . . well, that's alot of pain.

Still, I don't, I really don't, want to let pride or complacency get in the way of possible improvement, so an extra heaping of pain it is, and I'll note down every two weeks how my pain is, of differing types in my legs, and do this for three months at minimum.

I'm not optimistic, but  I guess we'll see.  If there's only a minor improvement, is that enough given that I'd likely have to keep up with some level of strength-boosting/painful activity to retain this improvement?  It depends on how much, if any, improvement we see.

**

On another note I don't think messing w/meds is a good idea.  I'm actually desperate to have higher Lamictal to be a barrier between me and aspects of my mania that I had forgotten how they felt, partly because I couldn't understand how I could feel that way and still be me; however, I am starting to be reminded.  I was going to go back up on Lamictal but just upping it a little, made the urinary system a touch worse, enough so that I just cannot make myself go back up; it'd be like having to use a hammer to squash a bug on my hand - I can't make myself do it.

I really, really don't want to get off the med, but I really, really can't live with the developed side effects either.  Just, this isn't me not wanting meds, I tried to make it work for a long time.  There's practically no choices left, of mood stabilizer (lithium has such a high side effect profile? is it? that I'd really like to let my kidneys and bladder heal up and have some time where I'm not constantly worried about my health and side effects; however, the mania isn't just going to go hide under a rock.  Ugh.)

When Your Doctors Don't Believe You

When your doctors don't believe you, you feel like you need to prove your problem/theory/what-have-you, if it is provable.

In my case, the Lamictal IS affecting my urinary system.

So the not brief but explained as briefly as possible history/experiences that I explained to all three doctors in September about these issues, WAS relevant, and I don't have to think of myself as a rambly, irrelevant person.

You see, I do ramble and/or am irrelevant at a variety of times to some degree or another.  BUT, I try to not do that at the doctor's office.

See, when I went and saw my GP a week after the Instacare guy prescribed oxybutynin, I did mention the bladder, urethra, and kidney discomfort/pain.  My GP said to keep taking it (because I'd laid out brieflly what happened after I stepped down off Lamictal, last year, unsupervised; it was what I consider to be likely a textbook case of how epically bad stopping a mood stabilizer on one's own can be.)

So, I kept taking the oxybutynin and the Lamictal. However, over the last three months the abdominal and sometimes side/back kidney pain had been becoming more frequent and too common.  The bleeding had gone away, the bladder was somewhat calmed down (although not like last March), but it still seemed to be over-producing as well as could only go about 4 hours, so it was still getting me up at night.  (Also becoming harder to sleep with the pain and discomfort).

The worries about it and the physical interference with good sleep are two factors in why I think the mania has been breaking out more the last few months.  The other factor would most often be stress from a juvenile court case in which I faced speaking in court, and other things (It's about the victim, not me, but since I'm not going to expose her on here, I'll risk sounding like it's all about me.)

These things all acted to marginalize the effectiveness of the 150mg Lamictal that I've been taking.

A week ago, it was getting so bad I wanted to go to my pyschiatrist, with proof, so I'd be believed.  Plus, I wanted it to stop.  So I cut my dose in half for a few days.

I did not expect such a quick or significant difference, figuring the urinary tract had been so abused for so long it'd need time to heal.  Within a DAY a significant amount of pain and discomfort was gone.

I knew that cutting the dose in half wasn't the wisest idea, so after a couple days I went back up, but only to 100mg.  I couldn't bring myself to take 150 and be that badly off, again.  The pain and discomfort went back up within a day of bumping back up, though not as bad as it was at 150mg.

Proof, anyone?

Now, I did consider that my judgment may not be the best right now, what with all the mania and stuff.  Also, the last time I took myself off Lamictal, the end results were . . . bad.

Still, this time it will be in partnership with my psychiatrist (as soon as I email her later tomorrow).  If she says to keep taking it, which I highly doubt, I'll do it until we meet and can figure something else out.  However, I hesitate to keep taking it for longer than needed to step down off it, because after so much abuse to my bladder and kidneys, what's the risk of permanent damage?

So, yes I took medical matters in my hands, but I didn't intend to do it for long, and as well the doctors didn't believe me before anyway.  Just because my psychiatrist said that this isn't a side effect of Lamictal, doesn't mean in my opinion that it can't EVER be; it's not a KNOWN side effect, perhaps.  Also, there are statistical outliers, people for whom their bodies' response to medications can or does fall way outside the reasonably or even rarely expected effects.

It's happened to me before, and now again.

I am regretful and a bit fearful that there is one less med between me and the mania; however, I'm on some Seroquel, which I wasn't last year, and I've handled twice as much as the current 150mg before, I think even over that to 400mg.  It was eventually stopped because at the time it was being used for depression, and didn't do much for that.  I can tell it's helping stabilize mood a bit, now, though.

Now, I actually don't think the doctors were wrong in what they considered and what that led them to recommend, AT THAT TIME (although they were still wrong, then, about the bladder/lamictal thing.)  There were several seemingly medically reasonable (to me) reasons to suggest going forward as the doctors had said with the Lamictal and the oxybutynin.  I'm glad I did things their way for long enough to know that not following orders wasn't what was going on.

My GP considered things with his knowledge, but also deferred to my psychiatrist as, I think, was proper to do given the risk of possible death if I stopped the mood stabilizer, since if I even THOUGHT I might start down the bad path from earlier this year again, I wouldn't be able to live with myself.  My psychiatrist, of the three doctors, gave me the best impression that she was weighing the pros and con of a medication that was possibly (though not likely as she did tell me Lamictal doesn't do that) harmful, against the pros and cons of stopping that medication.  She investigated anew with me how effective I felt the Lamictal was, and such, and I appreciated her doing that; it helped me feel that my experiences would all be a part of what she decided.  She said for me to keep taking the Lamictal, and I did, though reluctantly, because I'd been so tired of the bladder problems.

Knowing for sure, now, it IS relieving to know that something hopefuly fixable (after this long, has there been permanent damage?) is behind the kidneys/bladder.

I don't know that anyone necessarily cares about all this, but I don't know what audience I have in mind or think I have with this blog, so I'm all over the place with what I post and don't post.

Two Complicated Words

"Not Pregnant".

This afternoon those two words stared back at me from the pregnancy test.

I was happy, I was sad. I was relieved, I was disappointed.

Our recent decision that our daughter would remain an only child has been something that is hard for me to approach all the complicated feelings surrounding the issue of reproduction.

It's long been an emotional issue for me, because with Polycystic Ovarian Syndrome, my fertility has not been very good. Also, in the LDS "culture", it's "expected" that people have several or more kids; having an only child is something that makes you stick out as, well, not fitting the "norm". In fact, people seem to think there is something wrong, if you only have one.

Granted, that's an overgeneralization, but I have run into it first-hand; the automatic questions upon finding out that you only have the one child, at this age, as if they have any right to know what happened or why you only have one or why aren't you trying for more . . .

It's not mandated by our religion to have alot of kids, although being fruitful and multiplying IS a concept we hold dear (this of course explains the cultural expectation that is sometimes taken to hurtful words or excessive questions by those who more rigidly hold to this).

I wish people would just THINK for a few minutes, and realize that my reproductive decisions, abilities or incapabilities, and plans, is all information they aren't ENTITLED to just because they may have more kids than me, or just because they think I SHOULD be doing something differently.

Ah, well, I can't change them. What IS really difficult about those two words I saw today, is that it really brings home that I may (will) never be having another child. I use both words because it is so hard to bring myself to say the definitive, even though that is what we have decided.

When I recently discussed this decision with my doctor, he immediately started telling me about a permanent option to prevent pregnancy. I listened and asked a question or two but I mostly forestalled that discussion by saying that I need a year or two to "sit" with this decision, and that I'd like to get on the pill for the next year or two until I'm ready for the permanent solution. He was happy to acommodate me, and not upset that I'd turned down the other option. I'm glad to know about it, but it was, again, an unpleasant and surprising sudden facing of the decision we'd recently made, to be placed right up against a permanent solution . . . I need some time to come to terms with it.

Feelings of feeling like less of a woman, although my brain kicks in with, "Women who are infertile or who have gone through menopause, and therefore can't reproduce, aren't any less of a woman for it, so why feel this way about yourself?" I don't know why, I just know I have alot of complicated, mixed-up emotions about the issue . . .

Last but not least, I certainly didn't FEEL pregnant but I took the test because I'm near the end of the fourth week of the birth control, the week of "placeholder" pills, and I have not yet gotten my period. I only have two placeholder pills left before I start the actual hormone pills again, and so I thought I could be pregnant, perhaps, and was really worried about it.

So if I don't get my period next time I'll call the doctor; I read the insert that came with this first batch of pills and it talked about if you don't get your period the first month and preg test is negative, that it's only if this happens two months in a row do you need to call your doctor . . . at least I think it said that, I'll be re-reading it.

Despite all the reasons that having a baby would be a bad idea, there is a part of me that is sad. That is okay. A big part of me is relieved, as I said before. It's just a mish-mash of emotion, all brought on by two simple, hoped for yet surprisingly impactful, words.

A Rash on Lamictal

Last night I was thinking that I'd post in the morning that I had no rash so far, but lo and behold this morning, before I even look, I'm idly running my hands over the area just below my neck, and above my breasts, when I feel bumps.

All of a sudden, I think, "Rash!!" and I call my husband into the bathroom to look; he says maybe it's a rash, and that it looks sandpapery. That relieves me a bit, because the sandpapery rash is supposed to be the "innocent" of the two rashes you can get on Lamictal. I went and got my glasses on and then I had a look; to me it's got some reddishness scattered around, but I don't THINK it looks like a sunburn; I don't know that it looks like sandpaper, either, but this rash is very . . . inconsistent and spread out and like it's not fully formed yet, like it's just starting to appear.

So I'm going to go to therapy this morning, and then get some Benadryl and take it, since it's far too splotchy to look like a sunburn to me, and it DOES have a few sandpapery bumps. Going to watch it closely, to see if it starts looking like the dangerous sunburn-looking one, but will tentatively "diagnose" it as the other one, for now, since my psychiatrist instructed me to self-diagnose if I could and told me how to tell one from the other. If I can't tell or it definitely looks like the sunburny one, I'm to contact her immediately on her phone.

I'm a little nervous about this. Here I'd gone twice as long as last time without a rash, and was starting to think I was out of danger. I think I remember from the first time it was prescribed that I was told the first 6 weeks were the most likely to get the rash; I believe I'm in the sixth week.

If it develops welts tomorrow I'll know that I've diagnosed it wrong because she told me the bad rash gets welts on the second day.

I'm also feeling a little itchy all over, so maybe that Benadryl will be a good thing. Oh, this rash is in the same exact area it was in the last time. I don't know if that means anything. I had also just bumped the Lamictal up to 200 mg yesterday (It's supposed to eventually be 300mg in a couple weeks.)

Here's to playing with fire! (said sarcastically.)

Edit: It's a few minutes later and the splotchiness is gone, it may have just been from me rubbing at it. I see alot more tiny pink dots that feel lightly textured, so I'm more confident in calling this one the more benign rash; it's definitely NOT looking like a sunburn.