Tag Archives: questions

Fake (my) news

Do you listen to yourself talk? Do you have an internal editor who sifts through what you say before you say it? Do you tell people the truth when they ask you questions?

I don’t remember when this happened, but one day I remember listening to myself talk as if I were watching the conversation from outside of it. Not in a derealization kind of way, just in a way of WTF am I doing? Someone had asked me something and I was answering them, and the words coming out of my mouth were–technically speaking–lies. I wasn’t lying with malice, I was lying because I didn’t want the person to know how shitty I was feeling. I was lying because I didn’t want to have to deal with the eventual questions of why and have you seen a doctor and have you tried x. I was lying because I didn’t want the person to pity me, or to worry about me, or to think less of me for my health issues.

I’m in pain almost every day, from various parts of my body. Possibly from my mind, who knows. I feel lousy the majority of the days in recent years…not pain specifically, but sometimes it’s anxiety, sometimes it’s due to a known illness, sometimes it’s what my mind conjures, and sometimes it’s some unknown ailment. I get tired of telling people how I’m feeling when they ask. And for the most part, it’s not about them, it’s about me. I don’t want to deal with whatever the blow-back is, as I said above.

And on this particular day, I came to a realization of how often I lie (without malice) to people. Clearly I do it without forethought or planning…and in some cases it seems to be an automatic response. I try not to do it with Hub (he can often see through me anyway) and I definitely try not to do it with my therapist. Sometimes I will edit the “truth”, even though I suspect both of them know it. But with everyone else? I lie. I give fake answers. I edit the things I’m saying to meet the person I’m conversing with.

I hate how are you? I despise how are you feeling? I always feel put on the spot to answer in a manner that the person asking can understand or respond to in a manner that works for them. I absolutely abhor when Hub asks me what hurts or does something hurt? Again, no one else’s issue other than mine, but this is the truth.

I don’t remember a time when my body didn’t harbor pain. I don’t remember a time when my body didn’t report some form of illness–real or anxiety-induced. I don’t remember a time when I didn’t lie to people about those things.

How are you? Shitty.

How are you feeling? Shitty.

What hurts? Everything.

Giving those answers…what does it do for me or for the person asking? Nothing. It puts me on the spot to explain, clarify, defend, respond…and I don’t want to anymore. I would very much wish that I wouldn’t need to anymore, but in lieu of that, I lie.

How are you? Fine, thanks.

How are you feeling? Good days and bad days.

What hurts? Nothing new or different.

If you can’t beat ’em, fake ’em?


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CT Scan follow-up

I had my CT Scan for my one year post-cancer follow up about two weeks ago. I had my appointment with my gyn onc a week ago. It feels like longer.

I had a chest, abdomen and pelvis scan, adding in the chest because of a cough I’ve had. I assume(d) the cough is from my allergies, but I figured as long as I was going in I might as well just be sure. I was also supposed to get checked for kidney issues–as per my urologist–but it didn’t quite work out the way I expected.

I went in with my forms and told them I was getting checked for kidney stones in addition to my cancer check. This was post-barium-drinking. The woman at the front desk frowned at me and said that the barium screws up their ability to see kidney stones most of the time, so she shoved the prescription back at me. I asked her to go ahead and send the films to the urologist anyway. Why didn’t anyone tell me about this issue? But the urologist knew my gyn onc wanted with and without contrast, so she had to know it wouldn’t be the best view. Besides which, I think she knew I didn’t have stones, but this was a CYA kind of thing. Btw, I never heard back from her after the scan. Joy.

If you saw my ct scan post (linked above), you may have seen my comments on the post. I survived the scan (obviously) with residual pain and feelings of BLECH. I actually got my written report the day after the scan, but without commentary from my doctor. Just the report showed up. It was not remarkable, with the exception of some finding of soft tissue in the center of my chest area, which was declared as possibly “thymic rebound”. WTF is that? I did a NO-NO and looked it up, which actually resulted in very little information. So I messaged my gyn onc, who basically told me to take it up with my primary, as it was outside his expertise. He otherwise called my CT Scan as NED. I am a bit distressed that this scan didn’t mention views of my lymph nodes like the first one did after diagnosis, but I’m hoping that means they were not remarkable (and not that they didn’t bother looking…)

I contacted my primary doctor’s office and she’s out of the country until the end of July. That’s more than 3 weeks away, so I asked for someone else to review the report (because I don’t think they actually get to see the images). The interim doctor said it didn’t look like anything concerning, but I should see my primary upon her return. WTF.

So while I was sitting around waiting for THAT to happen, a relative suggested I get a second opinion on my ct scan images. I didn’t even realize that was possible, but back to Google I went. Turns out there are places online that will allow you to send them your images and have another trained and licensed radiologist read them. I had to pay on my own, but I wanted to get it done ASAP, so I forked over the cash (it wasn’t actually that bad, in the grand scheme of things). After some issues with uploading and getting them the clinical history they needed, they read my images. I got a written report about five days later (including a weekend).

Good news, the soft tissue was “without clinical concern” and was “minimal residual thymus”. The thymus is apparently an organ that is in use only before your immune system is developed, then it shrinks away to almost nothing. Sometimes when you go through chemo, radiation, surgery, or some other major issue, the thymus regrows to help your immune system, then shrinks away again. Since I’ve not had a chest ct before, I guess there was nothing to compare it to. Anyway, that was all good.

You see it coming, though, don’t you?

There is some asymmetric nodular tissue in the right breast axillary tail region compared to the left which is nonspecific.

Unh. I had my mammogram in February, with no notation of issues. I know there was something in my first mammo that they immediately followed up with using ultra-sound. That was then noted in my charts, but it was supposed to be benign. The wording is a bit different on this second opinion report (of course it IS a CT versus a mammo, so…). So I figured it was the same issue as before, but sent the second opinion to my gyn onc anyway, asking if I needed to follow-up somehow. After no response for several days, I sent another message today asking for a response.

The response was, “this isn’t my area of expertise, but here are three breast surgeons we regularly refer to”.

Cue uprising of anxiety and distress. Cue Googling the phrases in the ct report. Cue seeking some place of numbness.

Cancers based in estrogen “travel in packs” said my gyn onc upon my original diagnosis over a year ago. Breast cancer is one of those in the pack. The only history of breast cancer I know about in my family is pretty limited…supposedly my paternal grandmother had it, around 50-years-old, but my dad doesn’t remember details. My mother thought my grandmother had a mastectomy, but we have no way of confirming that.

So I messaged my previous gyno, who is in my area (my gyn onc and his suggested breast surgeons are all at least an hour away) to see if they can recommend someone I can see here locally. It’s only been about an hour since I sent that message, so I haven’t heard back. They might not be interested in responding because I haven’t been back to them since pre-surgery.

I am not having a panic attack. I am anxious and concerned. I am unhappy. I am fearful. And I am angry.

I don’t quite know what to do with myself at the moment. I had hoped writing about it would help. So far, it has not.


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Disease progression

My mother had a CT Scan this past Saturday to determine the progress of her disease and whether the current medication is doing any good. This afternoon, the doctor called to talk to her, then he called to speak to me at her request. She has trouble processing the things he says over the phone; I took notes while he and I were talking as best I could. He’s a nice person and very compassionate. I feel like he cares about my mother, and by extension, me and the family. I’m appreciative that he is honest, though he tries to couch things the best he can. I think he is a bit more straightforward with me than with my mother. But in the end, I generally tell her what he has said, because I don’t want her to not know things. There is little I won’t discuss with her, even when it’s difficult. I know my parents’ end of life decisions, as I’m their health care agent. We’ve done the paperwork for both of them, with me in the room to discuss things openly. I’ve spoken to my mother about concerns my brother had about my father’s mental health condition due to the pain he is in from his diabetic neuropathy and some back problems he is having. I know about their wills and their wishes. We’ve talked openly about death.

This time, I don’t know how to share with her. This time, I want to keep the words to myself, even from my brother and my husband and my mother’s brother, all of whom have been a part of this ongoing journey.

My mother’s doctor confirmed that her disease continues to progress, despite the current medication she is on. Spots are developing on her lungs, previous spots on her liver and in her lymph nodes are increasing in size. He is ready to try a new protocol at her option. But upon being questioned by me, he told me that this disease is going to continue to progress at a fairly fast rate, as it has to now. Post chemo, she had a recurrence in less than 3 months. Post radiation, basically the same time-frame, another three months.

We’ve been dealing with this since March of 2014. Eighteen months. What do I wish for at this point? That she makes it through to her birthday at the end of the year? To my birthday shortly after the new year? My husband’s birthday in early spring? The 2nd anniversary of her diagnosis? What do I hope for? No pain? No being bed-ridden? No needing 24 hour caregivers? No loss of dignity? No feeling of being a burden on the family?

The doctor is ready for us to talk to a social worker in his office about palliative care. He offered information to me on “what is to come”. He says Mom will start to lose weight for no reason. She’ll start being more fatigued and have even less stamina. She’ll move to being chair or bed-bound.

Those are the things I don’t want to discuss with her. The words I didn’t want to repeat to her.

She has been using a wheelchair and/or rolling walker with a seat (called a rollator) due to the stress fracture in her pelvis. But her ability to rebound from that has been poor. She’s been using the wheelchair and now the rollator since my niece’s wedding at the end of September. She’s tired a lot. Walking hurts her, and she’s exhausted after a short walk through the house. Is that the fracture or the disease? She’s short of breath sometimes, but she says it’s fatigue, the doctor is concerned it might be the spots in her lungs.

She tells me she wants to keep moving. She wants to go out and do things. I certainly don’t want her to give up. I just ache for her. I ache for what is to come. And I’m finding myself conflicted as to what to share with her…how much of my concerns I should and can share with her. There’s nothing she can do to change how I’m feeling, so why burden her with that? But I don’t know how to stay UP and positive all the time, especially since I’m working hard to hide the pain I’m in a lot of the time. I’m struggling to stay positive, to be her cheerleader, to put on a good face every time I see her.

It was easier to talk to her about all these things when she was still on the high side of this disease. Now, on the downward slope, it is all too painful and too real. I hope she will lead me to what she wants to talk about. But at some point I know there will be things she WON’T want to talk about that I will need to find the strength to address.

My mother is dying. How fast it will progress is beyond any of us. What to hope for, what to wish for, what to do…all beyond me at this point. I’m lost and angry and overwhelmed and sad and crying.


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It’s not good

When your gynecological oncology surgeon calls you at noon on a Sunday. It just isn’t. And even when he’s being kind and asking you how you’re feeling and how’s that incision doing, you just know it isn’t.

At this moment, I know very  little, except that he tried to reassure me that the prognosis is good. Despite the word CANCER coming out of his mouth. He tried to speak calmly and kindly, telling me it was a surprise to him, too, based on my hysteroscopy results, but that treatment will likely only be surgery to remove my ovaries, because it’s hormone fed cancer. But he gave me so little information, and I was so unprepared for this call that I asked him almost nothing. Despite all the knowledge I have from my mother’s uterine cancer, I basically asked him what the stage was, but he seemed unwilling to give me too much information at that point. Low grade, early stage. Those are the words I wrote down, among a few others. Then he told me we would talk all about it at my appointment on Tuesday.

I’d been just sitting down to have lunch when he called. There was food on the table, not much on my plate yet. I wanted to throw up. Instead, I bawled. I put my head down on the kitchen table and I bawled. Hub tried to comfort me, to tell me we’d tackle whatever it was together. But all I could hear in my head was the conversation at my mother’s first appointments. “Caught it early” they told her. “We got it all in surgery” they told her. “Early stage” they told her. Later, they ended up telling her it was a higher stage and higher grade because it was an aggressive and fairly rare type of cancer. The initial conversations were before the pathology came in about the type of cancer after surgery (they’d gotten cancer results in the initial pathology from her hysteroscopy). I’ve already had my surgery, but it seemed like he was telling me he couldn’t stage my cancer until after my ovaries were removed. I asked about lymph nodes, but I honestly have no recollection of how he responded. I’m sure they’ll take lymph nodes for testing. I’m sure I’ll get more information tomorrow. I’m sure I’ll be overwhelmed. I suspect I will cry, though I might be able to hold that until I’m home and can cloister myself away.

I waited more than four hours to tell my parents. I pretty much cried on and off those four hours. I called my mother–I couldn’t tell her face to face–and I told her. It was a terrible terrible moment to say it out loud. To say it to the woman who has been living it for over a year. To say it to the woman who had ONE DAY left on her radiation treatments, with the hopes of not thinking about cancer until her next PET scan. To the woman whom I’ve been cheering for for over a year. To the woman who is strong and has handled every single bit of her journey with such strength and such acceptance…and with an ability to live with so much unknown.

I’ve told no one else in my family. What’s the point when I have no information? I don’t even know what kind of surgery he’ll want to do or how quickly. I know that my mother had an abdominal surgery because they wanted to look around and do a pelvic wash to check for any bad cells floating around. But I just have no clue. I have no clue whether he’ll talk chemo or radiation or potential for …I don’t even know what.

I emailed T to see if she could spare some time for me. She’s leaving on vacation for a week, but I wanted to get some words of wisdom from her. She generously called me from home and spent about a half an hour talking to me. I told her I didn’t really expect to hear some great miraculous words from her, but I felt it was the right thing to do…to seek support from her. Especially since she’s going to be gone during this difficult week. She’s supposed to be sending me someone else I can call while she’s gone, but I haven’t gotten that yet. I’m not sure I’d go talk to a stranger at this point, but T assures me that this person would be a good fit for me. And as expected, I spent the thirty minutes on the phone just telling her I didn’t know what to do or how to act. That I didn’t know what I wanted people to say to me or to do for me. That I have no idea what to do with myself.

I cried on and off the whole of yesterday. Last night I had a vicious headache from the crying. When we turned off the lights to go to sleep, I did go to sleep. I was up early and the thoughts started racing right away. I want to be strong, but right now I feel weak. I am so fucking scared of what is to come. I’m so fucking scared.


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A three hour tour

That’s right, I said it, today I went on a three hour tour.

So, here I am doing my best to recover and not give in to my anxiety. I’m moving around, I’m TRYING to stay hydrated, and I’m trying to eat (I have no freaking appetite). My sleep is still disrupted, unfortunately, but at least I’m mostly able to get up and down from sitting without as much discomfort. My PVCs are really annoying me (especially today), but that’s not new territory for me, as we all know.

Then I start to realize that there’s a smell. TMI, I know, I’m sorry. But it’s coming from one of my incisions…the biggest of the FIVE incisions and the one in the worst place (in the “fold’ of my skin when I sit). I attempt to clean the area more carefully with baby wipes, without messing too much with the strip of tape over the incision. I hope for the best, but the next morning, the smell is still there. So I call the doctor’s office at 9:15 this morning (they supposedly open at 8:30) but the telephones are still turned off and I can’t even leave a voice mail. So I use my fancy schmancy portal system and leave a message for my doctor. Two hours later the nurse calls. And despite everyone saying things like “oh, they’ve heard it all!” the nurse seems completely perplexed. She’s never heard of this issue! A smell without pus, blood, heat, oozing, fever…just a….smell? She’s SO perplexed that she has to go find the doctor to see what he wants to do. She calls me back fifteen minutes later to say the doctor says to take the steri-strip (some sort of adhesive bandage?) off and make sure there’s no redness or pus. If not, he’s fine with me leaving the steri-strip off and just keeping the area clean…and keeping an eye on it. She suggests I go shower to make sure everything is clean before removing the strip of adhesive. Then she tells me “it’s going to hurt, taking that adhesive strip off of the incision…” and she has NO suggestions as to mitigate the pain. “Go slow” is all she can tell me.

I can’t really SEE this area because of the angle and the swelling from the surgery, so I have to have Hub do it. He SUCKS at this kind of stuff, generally speaking. But he does his best after washing thoroughly…and oddly the tape comes off without any issue. Any adhesive property is gone. He tells me the incision looks fine, but I ask for a mirror. I think it looks horrible and I can still smell the damn smell. And it’s making me queasy with fear. So although Hub had a meeting to go to in a few hours, I call the doctor’s office back and ask to see him. The kindly nurse fits me in, but our drive requires an hour with traffic. And there’s always traffic. Plus, storms’ a’comin’. Fun times.

Hub bows out of his meeting (his boss is really understanding) and we get on the road. The doctor’s office is busy again, and I am sure we’re going to have to wait over an hour. But twenty-five minutes later, the nurse takes me back. She asks what’s happening and I tell her. She starts to take notes, asks if I’m still taking the hydrocodone (vicodin!) and I say no, I only took it once in the hospital and it made me feel crappy. One eyebrow goes up. So she asks if I’m taking the ibuprofen and I told her I stopped that Monday. She seems taken aback. Then she tells me to hang tight and the doctor will be in.

Probably ten minutes later the doctor comes in and asks how I am. He takes a look at the incision and says it looks fine (Hub says I TOLD YOU) from his chair nearby. I tell him to shut up. The doctor thinks this is funny. Then I ask the doctor to talk to me a little more about blood clots. I tell him I have so much muscle pain (especially using my whole body to move around instead of my core…stuff hurts so much) that I’m afraid I won’t be able to decipher what is muscular and what is blood clot. He looks at me in a way that says he’s TRYING to understand, but doesn’t really get it. I tell him about my pre-existing condition and how it affects my muscles, and how anytime I stress them even mildly, they will hurt intensely. He tries to explain what to look for, but honestly it’s pretty much the same shpiel I got from the nurse originally. After that he sends us on our way with a prescription for anti-fungal cream because of the location of the incision and how it doesn’t get a lot of air time. He wants to avoid a yeast infection. Me, too.

We head back outside and it’s raining. We get back on the highway and head home. All in all it takes three hours almost on the dot. I’m exhausted and in some mild pain. My incision is clearly irritated and I’m doing my best to not just go lie down because I need to stay mobile (and if I go sleep now, I won’t sleep tonight).

Not the detour I had wanted, but I knew if I didn’t go I’d be worried. I’ve never had an incision like this before, or in this kind of weird spot before. I was too afraid not to go. Amusingly enough, when the nurse took my blood pressure before the doctor came in, it was really good. WTF. I was so uncomfortable sitting on the table because of my back and legs, but my BP was normal. I’m so fucked up.


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Boob mapping (ultrasound)

Follow-up to my Boob Squish post.

I had my pelvic ultrasound this morning (which got rescheduled because we had icy weather). The CRNP tried to call me this afternoon, but I was at my breast ultrasound. By the time I got home the office was closed. The tech confirmed the big fibroid (not surprising) and a thickened uterine lining (also not surprising considering my history). She did confirm that no impingement on my kidneys or anything, so that was good. The question is, what does the CRNP want to do next. No clue.

I went out to the Boob Mapping this afternoon. Once again, I had to sit around and wait for my appointment. At least it was only 20 minutes this time, in comparison to almost 45 minutes last time. The tech had me change into the gown and she took me into the ultrasound room. When she was setting me up, I asked her if she had a roadmap for where she wanted to go and she said YEP. But that was pretty much all the small talk I got. And because of the location of the machine and how I was lying on the gurney, I couldn’t see a damn thing on the screen. She concentrated on a couple of places on each side of each breast, goop going everywhere. Then she handed me a small towel, told me I could “clean up” and said, “You can lay there or sit there or whatever. Be back!” and she left the room.

If you are reading this and you are a radiology tech…take the extra minute to explain WTF is going on. I had no idea where she went or why, or how long she’d be gone. I was left sitting in this tiny, stifling, darkened room. Alone. With a blank machine and only my imagination. I finally realized on my own that they must have been having a doctor review the ultrasound. But I had no idea how long that was supposed to take. Why were they taking so long? Why was no one telling me what was happening? Was a doctor going to talk to me? If a doctor came into the room with the tech was that good or bad? Seriously, one extra minute of the tech’s time would have given me 10 minutes of less stress if I had understood what was happening. I tried to do deep breathing but the room was so small and so stuffy that I couldn’t do it.

Finally, the door opened and the tech came in with another person, who introduced himself as a doctor. Was that good or bad that he came in? Routine? Bad news? WHAT?! I felt like my heart was going to jump out of my throat and I wanted to scream. If the tech had told me this was routine, I might have heard everything that was said, you know?

Luckily, the doctor explained that one side of one breast was denser than the other breast, which was the reason for the ultrasound on that side. They found nothing concerning. The reason for the ultrasound on the other side was that the mammo picked up something and they wanted to see it better. He said between the mammo and the ultrasound, they feel strongly that it is a cyst (fluid-filled, he said — I said I seemed prone to cysts, since I have a long history of sebaceous cysts…he seemed uninterested). Benign. Nothing to worry about. Everything looks clear, he said. He asked my age, asked if this was my first mammo, and then told me they’d see me in a year. Nothing to follow-up on before then. He smiled and told me to have a good evening. I thanked him and tried not to be to profuse about it. The tech directed me back to the dressing room and told me to have a good day. I rushed to get dressed and went out to find Hub. I told him all seemed clear.

Then when we got home I had the voice mail from the CRNP at the gyno. Since it was from 3pm, I knew it wasn’t about my breast ultrasound because I hadn’t even been called back at that point. She only told me to call back, no other clue.

In the meantime, last night, I slept NOT AT ALL. I had a small panic attack, mostly because I felt like my heart was going too fast and was too loud. I couldn’t lie down. I couldn’t rest. I tried really hard to meditate with deep breathing, which I feel like I was actually able to do. But as soon as I stopped breathing and tried to lie down to go to sleep, my heart started pounding again. I started worrying that I was having an arrhythmia, because I felt like my heart wouldn’t slow down. So I had to be up at 6:30 this morning to get ready for my first test, and by 5am I was still awake. I dozed off for about an hour, then was awake. At 6:30 the doctor’s office called to reschedule my first test because of the icy roads. I dozed again from about 7-8am, then I was awake. It was a sucky night and I feel exhausted. I hope to make tonight a better night.

Tomorrow it’s my brother’s colonoscopy and my father’s acupuncture appointment.



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Trust in me…

…jusssst in me.
Shut your eyes and trust in me
You can sleep safe and sound
Knowing I am around

Slip into silent slumber
Sail on a silver mist
Slowly and surely your senses
Will cease to resist

Trust in me, just in me
Shut your eyes and trust in me

So at my last appointment with T, we had a very odd tangential conversation. The point that is relevant is that I told her I could not wear ear plugs at night while trying to sleep (Hub snores like a mofo) because I couldn’t stand not being able to hear if something was happening (the dogs, fire, someone breaking into the house, a tree coming down, car alarm, etc). And I added that for as long as there have been headphones for portable music, I’ve NEVER used both sides of the headphones/earbuds. I would either leave one of the earbuds out or put the headphone BEHIND my ear so I had one ear open. She looked at me and said, “You really have no trust in the universe, do you?”

I laughed and said that was correct. She told me she swims underwater with headphones (or earbuds, I’m not sure). I was somewhat appalled! What if something happens and she can’t hear it?? She said she was actually swimming and two lifeguards were trying to get her attention because there was an issue with the pool and they needed her to get out. But she swims with a snorkel and so she doesn’t even come up for air. They finally caught her at one end by touching her leg. But my immediate thought was that she could have really had a major problem and no one could get her attention… the thought of it just gives me the shivers.

Anyway, so the other night, I’m in bed trying to fall asleep, and I start thinking about what she said (about the no trust in the universe). And my mind just gets hung up on trust. I have major trust issues, I’m well aware of that. But until I started really thinking about it, I didn’t realize how pervasive it really is. How it touches almost every part of my life. I start wondering if it isn’t hope (or lack of) that might be my biggest issue…it might be trust. I feel like it took me only a few moments to come up with tons of reasons I feel mistrustful. I suspect if I worked at it, I could trace it back to before I even understood what was happening. But in my memory and consciousness, I know that it started when I first got sick and not one doctor knew what the fuck to do with me. I always thought that doctors were smart, and if you got sick you went to them and they fixed you. That didn’t really happen for me. I went through more doctors than anyone I knew at the time, and had more tests and procedures than anyone at the time. And not one time did they come up with an answer…most of the time they sent me on to another doctor without any diagnosis. ONE doctor thought he knew–and I’m grateful because I felt he tried really hard to figure it out–but he really only left me with a “syndrome” which is technically just a collection of symptoms that are otherwise not categorizable. From there, I have a whole passel of doctors that never really knew what to do with me.

Then we move to personal things. Like my trust issue with friends, especially when the person I thought was my best friend actually broke into my house, ransacked it, and stole from me. And early in my relationship with Hub, there were a couple of instances that struck at my trust with him. And again later in our relationship. As much as I know we’ve worked hard at our relationship, it hasn’t been without hiccups. I try very very hard to trust Hub, but there are times when that issue rears its ugly head. Next up? My own body. I feel like I can’t trust my own body to perform the way it should. The pain, the inability to do things properly and maintain energy. The inability to maintain a good weight and/or lose weight. The muscles that don’t work right. The joints that are no longer smooth and reliable, sometimes even fail to hold me up. The stomach that doesn’t work properly or reliably. The wheat allergy, the egg allergy, the carbohydrate sensitivities. Bleh.

Universe problems. Starting with my unknown illnesses and resultant disabilities, then another round of unknown illnesses resulting in more disabilities…both illnesses leaving me unable to work and earn a living and help support my family. Then 9/11 — and with  my mother in Washington D.C. less than 15 miles from where the Pentagon was hit. My grandfather was sick for months with no answers, then they finally figured out he had acute myeloid leukemia and he went into the hospital, then died alone overnight one night. My grandmother basically went blind, then got dementia and had to spend years and years being cared for 24/7 by (amazing) women who had to take care of her every need. Then watching her body slowly go downhill, and finally watching her die. Then my uncle fell ill with an unknown illness, he ends up in the hospital, and within days he’s in a coma, then dies. We still have no idea what happened. My aunt (his wife) gets ill from an unknown illness, goes into the hospital, ends up in a coma, and dies. We still have no idea what started it or why she died. My Sweet Pea, who got sick out of the blue, suffered through trauma and pain, and needed us to euthanize her so she wouldn’t suffer. My mother’s cancer, out of nowhere. All of these things happening in the last 15 years. There are more things, but I feel silly listing them all. I understand that life happens, and I understand that we are dealt the hand we are dealt…but that doesn’t mean I don’t feel mistrustful of the universe.

I understand that a lot of what I’ve said seems illogical. That doesn’t mean I don’t feel the way I feel. And I also wonder how control fits into this whole scenario? My lack of trust, does it lead me to wanting to control situations with the hope that I can make things work out the way I want? How are the two intertwined? How do I untwine them? How do I get over my mistrust I have? Any of it?

More questions than answers. More obsessing over the trust issues than I want. More things to talk with T about.


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Google me this…

Or not. Really, not. Despite the urge, I’ve resisted googling about my PVCs. I know it would end in increased anxiety and stress, which would so not be helpful to me right now. I mean, I’m already anxious and stressed, why would I purposefully add to that? I used to really think that Googling things about my health made me feel better, but I know that isn’t true. So I’m resisting, but I feel somewhat like a junkie, just thinking about doing it over and over again.

I have an appointment to see a family physician this afternoon to get a check on these PVCs. I’m pretty sure I’ve had an EKG done there before, so I assume that’s what they’ll do again. I’m seeing a doctor I haven’t seen before because my doctor is booked through the end of the month. I think this particular physician is new to their staff (and I suspicion has not been practicing for too long) and is a DO. Doctor of Osteopathy. I had a DO one time and really liked her. I hope this woman is nice. I’m anxious about the appointment, but that’s not really news. I really don’t like doctors and doctor’s offices. I totally get white coat syndrome, and I hate having to deal with conversations about my weight. There are lots of stories out there about doctors treating fat patients poorly, and I know that to be the case due to previous experiences. One time I went to a cardiologist who said to me (before doing anything or talking about my history) that I needed to get weight loss surgery. Dude, really? I’ve never met you before, you don’t know my history, and that’s how you open a conversation? Needless to say, that was a short relationship. I understand that weight affects health, but I do have other health issues, thankyouverymuch.

So anyway, I’m sitting around, nervous. I keep trying to distract myself, but I keep lapsing into periods of just SITTING and staring. Hey, at least it’s not crying again!

I also made an appointment to see the NP at that new gyno’s office, but it isn’t until the end of January. If I’d wanted to see the gyno herself, it would have been the end of FEBRUARY. Just as well, T told me that the NP there has a better bedside manner than the doctor (tho she recommended both), so I made the appointment with the NP.

How hard is it to find a good doctor? I mean, I’ve been through many doctors through the years, and in the end I’ve found very few that I felt comfortable with. It’s disappointing to walk into an appointment, hopeful that they’ll at least LISTEN to you and then walk out feeling like you’ve been blown off. I’ve dealt with that kind of scenario more often than not. I want someone who is going to support me in my health, not blow me off or talk down to me. I’m an adult, I’m not an idiot, and I have the right to be treated as respected human being.

So I guess we’ll see how it goes this afternoon. I know my BP will be up because of the WCS, but hopefully it’s not TOO high.

Also, why does everything hurt more now that I’m headed to the doctor? All these aches and pains that feed right into my heart health anxiety? Ugh.

But I’m really thankful that my mother is up to going with me to the doctor, since Hub is still working two hours from home…

eta – Doctor was fine. I’d see her again. She said my EKG was fine, my BP was fine. She’s getting CBC and thyroid test, which they always do for me but nothing ever comes of it. She saw no evidence of PVCs on the EKG but they are inconsistent and EKG’s are really short snapshots (obviously). She said the cardiologist might want to put me on a halter monitor if the PVCs are still there in two weeks. She suggested I hydrate more, reduce my stress (HA HA HA), and follow up with the cardiologist if things don’t get better.


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I’m still struggling. Last night was a bad night. I ate something that did not agree with me and for the remainder of the night, I was awash with anxiety. It was a typical gluten’d feeling: hot face, feeling hot and cold, anxious, antsy, wired, and thinking about my health. The few times I managed to doze off, I had terrible dreams that stayed with me even after. When Hub went downstairs to work this morning, I dozed again and had more dreams. Bad ones. Unhappy, uncomfortable ones. I’m tired, and I feel down. At the moment, I’m struggling not to cry.

On top of already feeling like crap today, two different times on tv they were talking about women’s health. The first one was heart health, and how women’s symptoms of heart attacks are different from men. When I saw that the segment was upcoming, I took the dogs outside and stayed out for at least half an hour so I would miss the whole thing. It’s too much of a trigger for me. But then as we were getting ready for dinner, there was a local report about breast cancer and how women are just skipping their mammograms. Since my mom was diagnosed with uterine cancer, I’ve been struggling not to dwell on the potential for the hereditary impact on me. I’ve never had a mammogram, though I’m 42. The year that it was first recommended to me, I was unhappy with my gyno, so I didn’t follow through. I’ve not been back to any gyno since that whole episode, so there’s been no one to write me a script to get one. And truthfully, I’m afraid of what might come of it. Now with my mother’s diagnosis, I’m even more afraid of cancer than I was before. Even though my mother did pretty well (relatively speaking) going through her surgery and chemo, I’m way more sensitive to everything than she is, and I’m afraid of everything surrounding the potential of cancer. Surgeries, chemo, pain, nausea, etc etc. But still, the segment on the news triggered me, and I feel anxious and upset. I know part of it is because I’m really tired, but part of it is because I am me.

Tomorrow I go back to the dentist for a cleaning. I’ve enlisted Hub to drive me to and from. I expect he’ll sit in the waiting room and wait for me, even though the dentist is only 15 minutes away from home and it’s only a cleaning. And if they let him, he’d come back and sit with me while I got the cleaning. I haven’t had a cleaning in about 3 years, and prior to that I was in and out of the dentist’s office fairly regularly. I didn’t love it, but I didn’t hate it. But my anxiety is worse now than it used to be for me. And this dentist is new to me, as is the hygienist I’ll be seeing tomorrow, so I’m apprehensive. I’m not anxious yet, but we’ll see how the night goes. Unfortunately, my back has been bothering me all afternoon, but I’ve already rescheduled once and I’d like to get this over with. I know the anticipation is worse than the actual appointment will be. I’ve had enough cleanings to know that they are generally uncomfortable, but not life-threatening. However, this IS the first time this hygienist will be dealing with my frakin’ baby tooth. Urg.

I had my session with T this past Friday. I ended up crying in session, because I told her how much I miss my writing. She keeps telling me that I need to get back to it, because it is my purpose. Without it, she thinks I’ll continue to be stuck and struggle. I want to write so badly, but it isn’t working. I’m angry that my books don’t sell anymore, and that no one ever gives me any feedback. It’s like dumping a child out into the void, never to be heard from again. It’s hard to continue to put yourself out there and never see any kind of return. In that same vein, I made a hand-made crocheted gift for a friend, sent it to her, and never heard back from her about it. WTH. It’s painful for me to say, but I want to be validated. I want someone to say THANK YOU. To say, “Whoa, you put your heart and soul in that. That’s awesome.” What I get is radio silence. And it makes getting motivated to do stuff very difficult. It used to be that I’d write for myself, but that doesn’t seem to be enough for me now. I need to find that kind of satisfaction for myself again, and quit worrying about other people validating me.

I do feel like I’m a bit depressed these days. I’m tired and angry and stuck. I’m in pain. My tinnitus is acting up big time. My weight is still an issue. I have anxious moments. Is that reason enough to be sad? Or is this a depressive episode? Does it matter?


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Me speaking to me

My last appointment with T (last week) was partially about Robin Williams, as I felt like it was interesting how it had affected me. RW was a part of my entire growing up years, both in film and on TV, and I was sad. Sad for him and sad for his family. But I also found it interesting how people responded–more about his life and his humanity than how it ended–so we talked about that a bit. Then we talked about how I’ve been kind of stuck on watching (or mostly listening) to Frozen. The songs seem to touch me in some way, and T encouraged me to continue to listen to the songs and “let them do what they need to do for you.” I don’t really like the animation–it in fact is rather offensive to me–but the songs are hitting me right now. So any time I have nothing on the television to watch, I put Frozen on and while I’m doing other things, I enjoy the songs. And it isn’t just “Let it go” that works for me, it’s almost all the songs…even though I don’t necessarily know why.

Once we were finished talking about that, we started talking about my previous homework. T has asked me to listen to a couple of specific Miles Davis songs, to see if that kind of music would move me, but again it was a bust. I see music so different from her (and others, I’m sure) because it’s more a “friend” or companion for me. It’s not about the emotions of the song, or even the words…it’s just about the companionship. I always have something going in the house–the TV or music–because I don’t particularly like silence. Sure, there are times when I will be in silence, but most of the time I like some kind of noise when I’m alone. I have tinnitus, and the way I chose to deal with that is that I keep noise on all the time to keep the tinnitus at bay. So television and music is just background noise…company, that is all. So finding the emotion she is looking for just won’t work for me.

We talked a little about the issues I have with eating–thinking about it so much, and how I not only pre-think it, but then I think about it as I’m eating and after I’m eating–and how that was going. I asked her if I’d ever told her about my grandmother. My grandmother loved us all, and was a huge part of our lives. Being the only girl, I got a lot more of her attention than the boys did, which was not always a good thing. My grandmother had her own weight issues, as did pretty much every woman in my family and in my life. As I was really in the hardest time of my life, pre-adolescence and etc, she was learning how to eat healthier and exercise. She went to extremes (which was “normal” for lots of people during that time period) on a low-fat diet, trying to control her cholesterol and blood pressure and weight. She went to extremes working out as well. And she talked about everyone around her, family and friends and strangers. She talked about their weight and how it fluctuated, and she talked about their size and the food they put in their mouths. And I was always overweight, so she put her hooks into me and tried to “help” me. She took me with her to her aerobics classes, and told me I needed to lose weight and eat differently. This went on for years and years. I never lost weight because I snuck food and I ate the things I wanted to eat when she wasn’t around. I hated dealing with her during those years, even though I loved her so much. I wanted to please her, but I hated that she hated how I looked and who I was. As a child, I had no idea that it was HER who had the issues and that she was projecting them onto me. At about fourteen, maybe a little younger, I was out with my grandmother and my mom. We were shopping for bathing suits for my grandmother because she was headed to Florida for the winter and while there she taught water aerobics to her elderly community every day. So she needed multiple bathing suits and she wore them out. So we went to Loehman’s, which if you don’t know, they were a discount store and their changing rooms were just a big open room where everyone could see everyone. We found her a couple of suits to try and went into the room to keep her company while she tried them on. After she bought stuff and we were back in the car, my grandmother immediately starting talking about some of the other women in the room. How heavy they were, how they didn’t look good in what they were trying on and if they just lost weight they’d look so much better.

I got so mad. I was always the good kid, I never talked back and I clung to my mother all the time. I never stood up to anyone, I never gave my opinion because I didn’t want to have a confrontation. Maybe I was younger than fourteen, maybe I was twelve or so, I’m not sure. But I was sitting in the back seat of the car and I said, “You need to stop!”

“Stop what, darling?” my grandmother asked.

I told her to stop talking about other people’s weight. Stop talking about what they look like or what they should or shouldn’t be wearing, or should or shouldn’t be eating. Stop judging them. She had no idea what I was talking about. I told her she talks about everyone like that, whether she knows them or not. And I said to her, “What if you overheard someone else talking about ME like that? That I’m too fat to wear a bathing suit? That I’m too fat to be eating that bagel? That my hips are huge and my thighs must jiggle…”

I don’t think she got it because I recall her saying, “But you just need to lose some weight and you’ll be so pretty!”

My mother looked at me over the seat back–she was driving–and I think she felt appalled. But she said nothing. I told my grandmother that every time she said those things about other people, she might as well have been saying it about me. Then I fell back against the seat and clamped my mouth shut. It’s possible my grandmother may have apologized and said she would try not to talk like that anymore, but I’m not sure if that’s real or I made that up as an adult to make myself feel better. I only know that things didn’t really change, as she continued to watch my food intake and my weight.

T asked me if I had ever told my younger self that it was not my issue but it was grandmother’s issue. I didn’t answer, but apparently I had a look on my face because T sort of smiled and said that it was clear I didn’t believe what she was saying, that it would make a difference. I asked why she said that and she said that every time she talks about being kind to my younger self, I make a face. I told her I didn’t understand how to do what she was suggesting because I AM an adult, and as an adult I understand what the issues were. And how was I supposed to talk to someone (my younger self) who didn’t really exist anymore. And she tried to tell me that younger self still lives inside me and she’s STUCK because I haven’t gotten past those traumas of my youth. I said I didn’t understand how to talk to “my younger self” in the manner she suggested. So she asked me to try to picture that day and picture all the details. Then picture myself as an adult sitting next to myself as a child. And then talk to younger self about how the things my grandmother was saying and doing were HER issues and not mine. That I’m a fine and creative child, sweet and compassionate, smart and worthy.

I could only tell myself that it was my grandmother’s issue, not OUR issue. Then I cried, and I asked T if I could go home and write this instead of saying it out loud. She said “sure” and asked me to email it her before our next session. I think mostly because our time was up. I still haven’t written it, but I will. I just don’t know how it will work for me or how it will make a difference. But I always promise to try things…and if they work that’s great. If not, I will try the next thing.

Anyone else talk to their “younger self” ? Does it help you?


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