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Category Archives: paranoia

I haven’t posted

mostly because I wasn’t sure I was ready to really share. Sometimes I need time to process before I know what to say. Often when I’m in session with T, she’ll say things and I’ll just sit there for a minute before I say, “Oh-kay” even. And then I’ll need to take home what she’s said and really process it.

I’ve been processing the hell out of some stuff.

We went to see my mother’s new radiation oncologist, who was not upbeat about the situation. He, in fact, was very gloom and doom about my mother’s prognosis. She hadn’t had her PET scan yet, but he seemed to indicate that they weren’t likely to be able to “cure” my mother. We spoke with him for about 45 minutes, maybe an hour, and he tried to explain what was going on. The phrase that still eats at me is, “Chance of cure is not high.” It took me a while to think on the fact that just because she can’t be “cured” doesn’t mean she can’t live WITH the cancer. But at that point, we still had no results of the PET scan, so we had no decisions to make. She has since had her PET scan, but the radiation oncologist did not call her to talk to her about his suggested path as he was supposed to. She ended up calling his office three days after the test, talked to the receptionist and left a message (the receptionist said, “oh, it’s always good that the patient calls to remind the doctor he was supposed to call” and she was SERIOUS not snarky!) but didn’t get a call back. So she called her chemo oncologist and left a voice mail and HE called back right away. He said he was going to call the other doctor first thing this morning to talk to him. Then he sent her the written report. But reading those damn things is…hard. So we still have no set path, and at this point Mom has decided she wants a second opinion, no matter what.

The appointment was hard. The doctor put his hand on my shoulder as we were walking out of his office and said, “I’m sorry to give you such bad news.” It made my heart skip a beat. It’s like you aren’t sure what is exactly being said, but when a doctor says that to you point blank, you really get it. On the way home in the car, we were only mildly discussing the appointment, but also trying to talk about other things. I knew my mother was upset–this whole episode has been much worse than the original diagnosis, the hysterectomy, the chemo–so I was trying to do something to help her. I finally wrote on my notepad (I always take notes for her during appointments), “Today you are okay.” I ripped the page off and handed it to her, and I told her to just keep it in her pocket. Every time I see her she shows me that she has it with her. The truth is, today she IS okay. The recurring spots are small and localized (at least from the CAT scan that found them), and she’s not having symptoms. (The unfortunate part is that they are concerned it has made its way into her lymph system…and also that it recurred so quickly after chemo ended.) So my brother and my uncles (her brothers) are all researching and inundating her with information, but I’ve been staying out of it. I’ve been doing what I can do, which is talking about other things with her. Doing other things. Planning other things. When she brings something up about the cancer or the research, I talk with her. But otherwise, I don’t bring it up. She has enough of that from everyone else.

The same day my mom was getting her PET scan, I was in with the gyno CRNP talking about MY fantastic upcoming procedure. Apparently the next step for me is something called a hysteroscopy. Where they put you in stirrups and shove a camera and a tube past your cervix into your uterus–which they fill up like a water balloon with some liquid–and poke around. They also take “material” for biopsy to see what’s going on. This is done in their women’s procedure center, attached to their office, which fortunately is attached to a hospital. So I get to be awake, but I’ll be having all kinds of medication. Now I’ve had a biopsy before, but no camera. This is supposed to take a little longer and likely be more uncomfortable than just a biopsy because the camera is larger and there’s more that needs to be done. In preparation for this fantastic voyage, I get to start my week by taking 800mg ibuprofen today, 2x a day, for two days. That’s today, by the way, and I’m home alone. So I have no Hub to be my safety person as I take my pills. I know it sounds weird because we’re talking about ibuprofen, but I haven’t taken ibuprofen in 15 years. I take nothing, other than the occasional antibiotics and only recently that stupid progesterone. I don’t even take tylenol or aspirin. So I get to take that ibuprofen with lunch, then again with dinner. Then 2x tomorrow, as well. AND I get to take something weird tomorrow night to “soften” my cervix in preparation for the camera. And then morning of the procedure, I get more ibuprofen AND a beta-blocker (which the doctor says is FINE with my PVCs) in preparation for counter-acting the epinephrine I’ll be getting directly into my cervix during the procedure (which causes people to be “jittery” and anxious!). I’m so unhappy about all these medications, I can’t even explain. I’ve been blocking this whole thing out until this morning so I wouldn’t have to think about it. I asked if they were going to be monitoring me, and the CNRP said they’d do my blood pressure ahead of the procedure, but during they basically just visually monitor me…and depend on ME to tell them if something is wrong. I wanted to laugh and cry, because those of you who are anxiety sufferers KNOW that we don’t interpret things–like pain, breathing, heart rate–properly when we’re anxious. Now the doctor DID prescribe me a couple of ativan pills in case I needed (or wanted) to take it the night before or morning of the procedure. I’ve had ativan ONCE in the hospital ER when they were putting me into the MRI. I don’t remember much about it, but I’m worried if I take the ativan (0.5mg) the morning of, I won’t be alert enough to tell them if something is wrong. I’m open to opinions on that from those of you who have experience with ativan.

I’m also concerned about being in that kind of horrible position for an extended period of time, due to my muscle issues. The CRNP keeps telling me that recovery shouldn’t be bad–lots of women go back to work the next day, some even go “shopping” the same day she told me–but I have muscle pain after going to an annual exam because of having to keep my legs open without any kind of support. So the CRNP offered me “candy cane” stirrups, which I found out later will sort of hang my feet in the air rather than me putting them into stirrups and having to keep them balanced. No idea if the candy cane stirrups will be better.

On top of all of that, I am trying to ignore the potential result of the biopsies they might get. This part has been really really hard, because it scares me the most.

I’m feeling overwhelmed between what’s happening with me and what’s happening with my mom. The potential scheduling of my procedure caused me so much stress because I KNOW it’s going to take me a couple of days to recover, and I was worried that my mother was going to have an appointment during the time I was unable to get around to go with her. I tried to work things out, but we had no idea what timing was going to be with her scan and her results and etc. As it turns out, because she’s considering a second opinion, I should be okay by then to go with her. And if not, my uncle (her brother) has really stepped in to attend appointments…he has some medical background, so he understands things differently than we do.

So just the length alone of this post should indicate my mental state, eh? If you’ve read all of it, thank you. If not, no worries. I just needed to be able to vent AND put this all done for posterity.

(and for record’s sake, my PVCs have been milder and less often in the past two or three days. I have no idea why.)

 

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Pills a poppin’

So follow-up to my poppin’ pills post, I popped the first pill. I SKIMMED the leaflet that came with the pills, then made Hub read it, because even skimming it upset me. Then Hub came up to the bedroom (which is where I retire to after dinner most nights) to stay with me while I started my pill escapade. That was 2 1/2 hours ago. He left me here alone (he went downstairs) about an hour ago. I’m sitting with my heating pad because all my muscles hurt. I’m sure it’s not the pills, it’s how I handled the stress of taking the pills. My entire body was tense, I can feel the after-affects of it. Everything hurts. About an hour in, I couldn’t take it anymore and I asked Hub to retrieve the heating pad from the family room because my arms and shoulder and neck were all killing me (and I cried at this point, too). I was shifting around a lot on the mattress, which I do when I’m anxious. And I was putting weight on my arms and shoulders to do that….and I was sitting hunched over which hurt my back and neck and shoulders.

I’m still in pain. I still feel restless and anxious. I tried to use the techniques I know to keep myself from going over the edge, but I don’t think they were entirely successful. Especially considering the shifting and the pain. My hands really hurt, too, which I’m noticing as I’m typing. Hands and arms. I’m not sure how I’m going to sleep, as I’m still feeling somewhat edgy. And of course the pain isn’t helping. I’ve already asked Hub if there was muscle pain on the leaflet, but he said not general muscle pain. More to the tune of leg pain, which I would assume is liken to blood clot type pain. See, even now I can feel my legs tensing. It sucks. I’m stuffy from crying, my whole body hurts, and I’m warm from the heating pad and edgy from anxiety. I don’t know how I’m going to sleep. I still feel like any minute I could have some kind of adverse reaction or side effect. I’m still anxious.

For some stupid-ass pills. Stupid-ass pills that hundreds of thousands of probably millions of women have taken and survived without injury or harm. And right at this moment, at least I can count myself among those who have taken the pills and come out the other side.

At least, the first of ten times. Ugh.

 

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Poppin’ pills

I don’t mean to be glib, please don’t take it that way. I just couldn’t think of another title for this post.

I have to take some pills. I’m extremely sensitive to pills. I hate taking pills. I take next to nothing at this point in my life because of my sensitivities. I take almost nothing OTC and nothing prescribed (no one has requested me to take rx meds these days for anything medical). I’ve taken anti-biotics when necessary, and I only take the z-pack because I know the repercussions of that…and even then I make Hub sit (and stay for about an hour) with me when I take the first pill. Taking medication gives me very high anxiety. I still have no idea how I forced myself into taking the digestive enzymes and probiotic pills I take daily.

So as per a previous post, I’ve been to a new gynecologist. She requested blood work–which I gave on Monday afternoon and the results were back already on Tuesday morning, WTF?–and all came back normal. I’m waiting on the good ole pap smear, but what the CRNP really wants is for me to get an ultrasound (outy and inny, for those of you in the know) to check my lady innards. I know she’s going to find fibroids, that isn’t new. But the other thing she wants to check on is the lining of my uterus. Previous tests have shown that to be “thick” — which shouldn’t be terribly surprising, considering my crazy cycle. This is the first time, though, that the doctor (or CRNP) has wanted to force a cycle before putting me through the tests. In fact, two of the previous times I’ve had the test, the doctor has pulled me directly from the exam appointment and right into the ultrasound test. So anyway, the issue that remains is that I gotta take progesterone to force a period. I’ve taken P before–over 20 years ago?? Maybe-ish…and I actually don’t recall it working. I don’t recall much about it, actually. That was back before I really struggled so much with anxiety. Now, I struggle with anxiety, and I struggle a ton with health anxiety. And I am entirely paranoid about pills. I have to be on these pills for 10 days. Generally, once I get over the first day (or two), I’m okay. That first day is a kicker.

I’m trying not to think about it between now and when I start taking them (probably Thursday evening). We were waiting a little bit to see if I started a cycle on my own, based on my exam (sorry, TMI) and some physical symptoms I’ve been having. But so far, no luck. And at this point, I’m pretty sure I’ll be needing the pills. Prior years, I suspect I would have just ignored the pills and not followed up with the doctor. Now, after my mother’s issues…I’m going to push myself to deal with the pills. I wish I had an appointment with T this week, but no such luck. I’ll have to work through this with the knowledge I have.

Anyone do progesterone pills? Want to give me any words of wisdom? I had asked the CRNP, and all she said was it’ll make me grumpy. WTF, that’s not what I was trying to find out. I got the prescription and all the fantastic paperwork that comes with it…and I skimmed it, but I’m afraid to read it. Anyone?

 

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Went to the doctor

Yeah, don’t get all excited. I went into the past weekend (sorry, this is posting later than it was written) with a sebaceous cyst acting up. I’ve had three that I recall in my lifetime. The first one scared the crap out of me because it grew pretty fast and was incredibly painful. It was under one arm and in a pretty lousy place. I went to the doctor (same doctor as today btw, even though I don’t love her) who sent me home saying the cyst hadn’t gotten infected enough yet. WTF. She told me to go home and come back when it was big and ugly and gross, and had a head on it. W.T.F. But like an idiot, I did. And when I went back to her, she gave me a local and cut the fucker open. It was so bad she had to pack it with gauze and I had to go back multiple times to have it cleaned and re-packed. Not a pleasant experience, all-in-all. Because I did it in her office, she said she couldn’t get the “pit” of it out, and it would likely recur. It hasn’t as of yet, but I have a little hole in my skin from the “surgery.” Fortunately, hub doesn’t care and neither do I.

The second cyst was on my back kind of up toward my shoulder. I don’t recall what happened with it, but I think it came to a head without being painful. I, uh, drained that one on my own. It was a painful, uncomfortable, bizarre procedure both because it was GROSS and it was in a weird location. It was difficult to reach and required a lot of pressure and a lot of time. I suspect this happened during a period of time where my anxiety wasn’t that bad, otherwise I would have not done it at home without considering that I could have gotten it infected. I’m pretty sure I didn’t get the “pit” out of that one either because there’s a little bump that remains. It, also, has remained dormant.

Now I’m on sebaceous cyst number three. This one has been around and quiet for multiple years. I don’t even know how long. But over the weekend it started getting painful, and now is both red and painful. But apparently not red and painful enough for Le Doctore. She poked around and pronounced it “not ready.” Zuh. She wants me to go on anti-biotics to hopefully kill the infection, then consider having it surgically removed at a later date. She doesn’t do it anymore at all, she says. But her preference for ABs was Bactrim. Said I should be feeling better by Monday (it’s Friday IRL). If not, then it’s referral to surgeon time.

As I have said before, not only am I incredibly sensitive to medication, but I also have anxiety. ANXIETY. Over health and medications and food (mostly food reactions/sensitivities). And thanks to Prilosec I am incredibly paranoid about taking any drugs. My go-to for ABs when absolutely required is a Z-pack, because I know my response to it. At least, I think I do. But she said Bactrim was broader based, better for those nasty “super-bugs” (OMG did you just say that to a health-anxiety ridden person?), and less likely to cause side effects. So like a doormat, I said, “Okay.” I did ask her about Z-pack, but she said Bactrim would be better.

Hub brought me home from the doctor (RX sent directly from dr office to pharmacy) and said he’d pick up the RX after work. Meanwhile, my throat has started to ache. Hub has been sick for over ten days…a nasty one. That has meant no hugs, no kisses, no sharing hand towels, lots of hand-washing… So I’m not sure if the throat is because I had a swollen gum and it’s just extended to the throat, or if I’m starting with allergies that I’ve never had before but am susceptible to…or if I’m getting sick. So I’m thinking, okay, Bactrim will zap that cyst infection AND knock out whatever might be boiling in my throat. And I tell hub on the way home from the doctor that I’m going to struggle not to look up Bactrim on Google. It’s not good for me, it really isn’t. And I’ve done pretty well over the past couple of months.

But listen people, I’m human, you know? And I feel the paranoia creeping over me, so I do it. I type “Bactrim side effects” into the damn Google search engine. And I don’t even have to click on a page because I see it all in the search results….anxiety, paranoia, panic attacks, racing heart, palpitations. ZOMG. So I type in “Bactrim anxiety” and I open one page. And it’s ALL OVER FOLKS. People telling me they’re not feeling recovered from the anxiety and paranoia and panic even after months off the medication. I know, I know, I’m a bad girl. But the thing is, if there’s a side effect, I’m likely to get it. And I’m already fucking prone to anxiety and panic, I do not want to do it to myself, on purpose, with full knowledge of the potential.

Did I mention my therapist is on vacation at the beach? Ye-ah.

So after hemming and hawing, I call the doctor’s office and tell them to send in a prescription for z-pack. I haven’t decided if I’ll take it (by now I either did or didn’t) or not, but I did do some research on the sebaceous cyst. People have suggested Castor Oil to draw out the head on the cyst, and to help it drain. I figure I’ll try that and see what happens. Of course, that doesn’t address the throat thing, but I have dealt with that in the past by gargling (and drinking) apple cider vinegar and honey mixed in warm water. It’s gross, but it does work for me most of the time. I already started that regimen, so hopefully that’ll help me without the ABs.

Good news, my blood pressure was disgustingly normal. That’s pretty unusual for me at the doctor’s office. And my pulse was a very nice number…also not usual for me in the doctor’s office. I get white-coat syndrome, and should have had it full force considering I really thought Le Doctore was going to slice and dice that cyst right there in the office using lidocaine and epinephrine (of which I also fear–the epinephrine, not the lidocaine). So that was strange for me. I am starting to suspect the blood pressure deal is because I’ve lost a good amount of weight over the last three years (don’t get all happy for me, it’s mostly been because of diet restriction because of illness–although it’s not like I’m wasting way over here). So hey, good blood pressure and pulse, go me. This is the third time I’ve registered so nicely in some not-so-nice situations, so I’m almost starting to believe that it’s a real number for me. Almost.

We’ll see how this all turns out. Either the cyst will be alleviated without ABs or with. Either I’ll take the ABs or not. Either the throat will hurt or it won’t

Funny, my nutritionist called so we could discuss the anti-biotics. Normally she’s against them because they fuck with your “gut” and that’s what we’ve been trying to heal because my tummy’s all in trouble. And when my tummy is all in trouble, it affects every other damn system in my body. ANYWAY, she said if I (and Le Doctore) feel I should be on the ABs, to go ahead and do it. But I get to anti-whammy it by upping my intake of probiotics. And as I’m on with my nutritionist (who is also a nurse), hub messages me to say my RX for z-pack ain’t in yet, and might not be until tomorrow. *sigh* Hey, at least I’ll get to try to castor oil without feeling guilty that I didn’t start the ABs.**

Wow, this wandered around, didn’t it? If I remember, I’ll come back and drop an update as to what happened. Although, maybe I will have already blogged about it. Gotta love the scheduler on wordpress…blog one day, publish two days–or weeks–later. Fun!

(I feel like I sound chipper, but the truth is, I’m annoyed and frustrated. I hate feeling sick, no matter what kind of “sick” it might be. I feel like I’ve spent way too much of my adult life feeling “sick” in some way. Grrr.)

**Sad to report castor oil didn’t work…did absolutely nothing but make my skin feel softer. Actually kind of felt like it burned a little, but that really could have been the rubbing of the gauze pad against the sensitive skin of the cyst. Meanwhile, due to miscommunication, doctor didn’t put in my RX for z-pack until Monday morning. Hub picked it up after work and I submit to it tonight after dinner…when hub is here and can sit and stare at me to make me comfortable taking pills. I hate taking pills, I always worry about having a reaction because I had a bad reaction to an anti-depressent thirteen years ago given to me for pain relief. I never take a new medication unless hub is home with me and can sit with me for at least an hour. It sucks. I do have experience with the z-pack in previous years, but it makes no difference…I cannot be alone to start a new course of medication.

 

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My ER experience

I went into the emergency room of a local and well-known hospital  because of the symptoms I had been dealing with for several weeks. On top of an onslaught of depression and grief, I had been suffering from extreme lethargy, lack of interest, paranoia (mostly over food), body pains, weakness, severe panic and anxiety, lack of concentration, heart palpitations, and more. I had no idea where all this was coming from, and I was unable to continue the way I was. I scheduled with my husband and parents to go to the ER on a Monday morning, so that we knew who would take care of our dog and how my in-laws (in from out of town) would be dealt with. I had packed my bags for a multi-day stay, just in case. Even though I knew I was doing the right thing by seeking help, I was scared shit-less. I was terrified the hospital would find me mentally unstable and would have me committed. I begged my husband to never let me out of his sight, to not let them take me away. I was so sure I would not be coming home that I left my husband a note telling him goodbye, telling him how much I loved him and how sorry I was that I had done this to him. There was more in the letter, very personal and private emotions that spilled out, because I knew in my heart that I was going to be taken away from my family.

We went into the ER and as expected, had to wait. Because of some of my symptoms, they did take me in briefly for an EKG to check my heart, but I guess it must have been normal because they then sent me back to the waiting room for quite some time. While I was out there, I struggled with my panic and anxiety. I struggled to sit still, but failed. I shifted in the wheelchair I’d come in on (I had no strength to walk in from the car, let alone walk through the ER), constantly moving my body around. My heart raced continuously and my fear over what was going to happen in the ER escalated minute by minute.

When they finally brought me back to a tiny room, they re-checked vitals and took a urine sample. Pretty quickly they realized I was dehydrated, so they set me up with an IV before I even saw a doctor. I don’t remember everything about the experience, but I know at some point they moved us from this one room that had a private attached bathroom, to another room that was just as small but did not have an attached bathroom. It was here I was seen by doctors, including a neurologist. They were concerned that I was neurologically impaired due to something called Guillain Barre syndrome, but the best way to test was by spinal tap. Since the neurology resident wasn’t feeling confident about the diagnosis, we requested she speak with her supervisor before we went for such a painful and (terrifying!) invasive test. Instead I went for a CT Scan of my head and neck. My husband, G-d bless him, insisted he go with me to the CT scan, even though he had to wait in the hall outside. It was a quick trip, and the neurologist came back in shortly thereafter to do her physical exam. I’ve been through these before, stand, sit, walk, scrape the foot, test the eyes, strength, balance… the majority of these results were normal for me, a few slightly abnormal, but nothing alarming. She felt my hearing was compromised in one ear from one area, but it wasn’t something I’d ever noticed.

Then the CT scan came back with an abnormality in the hearing and balance area of my brain, so they immediately scheduled me for an MRI. I’ve had an MRI before…once. I hated it. And even then I’d been concerned about the dye used because people can have anaphylatic reactions to it. But I was told this was a different kind of dye, and that if I was nervous I could have an Ativan before the MRI. I told the nurses that yes, I have anxiety, and yes, I am severely anxious about the MRI and how enclosed it is, and how I can’t keep my head still when asked to do so. But that I was too scared to even take the Ativan. They assured me the Ativan would be short-lived, and that it was unlikely that I would have a reaction. I was actually surprised at how compassionate the nurse was with me, and the resident doctor as well. And considering I was in the emergency room and could be seen right away if I had a reaction, I finally relented. They gave me a small pill and I took it. And I sat and counted the clock, waiting to feel something…good or bad. Instead I started feeling mildly sleepy…and numb. When they came to prep me an hour after the pill for the MRI, they gave me more Ativan intravenously, then took me away. They wouldn’t let my husband come this time, as they said it would be a long wait and no place for him to sit.

Although I remember going to the MRI, and how nice the techs there were, I had no real sense of time. I knew I was in there a while, no question, and I was bored out of my gourd, I was mostly just…bored. The noises were annoying, and staring up at the stupid mirror showing me my feet was … boring and aggravating and kind of confusing. It was like, what the hell were my feet doing over my head? After some time, the tech came out and gave me the dye in my IV, then rolled me back into the MRI, telling me it would only be another hour! And no, even though my ass hurt like a mother-fucker, I could not adjust on the table because I had to be in the exact same position. I think there was music playing, which they’d asked about initially (top 40 or pop, please), but I don’t remember much of it.

When I came back, my husband was waiting in the hall for me, like a caged animal. He told me I’d been gone for 3 hours. I had no idea…again I knew it had taken a while, but not that long! Ativan, interesting creature.

The neurologist came back saying I had something called a schwannoma in my brain. Benign, she told us, and smaller than they had originally thought. Centered on the balance and hearing part of my brain on one side (I think it was the right, which would affect the left side). She scared the hell out of me and my family. Schwannoma is a collection of extra cells that grows extremely slowly. They apparently don’t do anything unless it is causing problems. I’ve had balance problems for 13 years, attributed to migraine associated vertigo. Now we were left wondering if it was the schwannoma instead.

The neurologist talked to her supervisor about the guillain barre syndrome, and they decided it didn’t really match what was happening, and so the lumbar puncture was canceled. And I was told I was dehydrated and undernourished, and that my inactivity had led me to the pains I was having, as well as the lethargy and stiffness. I was told to go home, stay hydrated, eat more, and move.

(and not so incidentally, after weeks of no update from the neurologist, I made an appointment with their out-patient clinic, went out with my supportive family, only to be told by the resident and senior neurologist that there was nothing showing up on my MRI at all — well, except my brain…so the whole scare was a false reading! ARG!)

After the ER visit, the next day, I had that horrible panic attack and eventual realization about Prilosec.

 

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