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Category Archives: trust

All the colors (pic heavy b/c yeah)

So here’s the thing. I went into the salon and said, “no yellow and no orange” and had given them an “inspiration” photo which I think they must have misplaced. But truthfully, I told the stylist to do what she thought would look awesome, but that I wanted purple and blue to be the base colors.

I got some purple (in some lights) but not as much blue as I wanted. Beyond that, the stylist really went gung ho on my hair. Other stylists kept stopping to watch, and one who went home before we were done made my stylist promise to get pictures and put them on instagram. Ya’ll are gonna see more of me than you ever have (don’t be dirty!) in this here post.

So for comparison, here’s my hair under normal recent circumstances.

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I had some color done last January and that shit just hung on for dear life. It really didn’t look too bad, but you can see it was growing out. It was red, so the stylist was worried about some warm orange tones sticking around even after the “lift” procedure.

Step one…I call this “Foil and Plastic Nightmare”

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It was hot as shit under those plastic sheets and those foils. And then THIS nightmare happened…

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I had no idea this is what would happen. I seriously sent this to Hub while I was in the chair saying, “Who am I and what am I doing here?” His response was “uh, okay…” I walked into the salon at 9am. By the time they’d washed and toned and washed this mess, it was about noon. My ass hurt so bad from sitting in that chair, I can’t even…

Then I got the goods… (I wish I had taken pictures of the colors in the bowls, but alas, I did not.) This was about the time other stylists started stopping by the chair to watch the painting. Every now and then one of them would walk by and go “oh yeah!” or “so cool!” or whathaveyou. It was weird.

That’s some shit going on there. At this point, my butt hurt so much I actually got up from the salon chair and was walking around aimlessly. I was pacing around in the front area and a poor woman came out of the salon area to pay and I think I scared her. She jumped and sort of giggled, then ran to the desk to pay. So then I sat on the cushy sofa in the front waiting area while I ate some crackers I had brought along. Shortly thereafter, the stylist came to check on me and we headed back to wash out the colors. Oh, the colors! I got a wash and a special deep conditioning and a scaaaaaaaaalp massage. Then back to the chair. She did a quick trim (I only wanted a trim), showing her assistant how she was handling the cut (which I had thought she was going to do in layers but I don’t think she did).

I wish I had pictures of this, but it was now 1pm and my stylist had another appointment at 1:30. So she pulled in her assistant and the TWO of them started drying my hair at the same time. One yanking one direction, the other yanking the other direction. And as my hair is drying, they both start grinning and pointing at different sections of the hair and I’m like WTF, just show me already! So my stylist laughed and they just kept going. Big round brushs twirling, yanking, hot air. It was quite the show. Then they took a picture with my hair straight.

Brace yo-selves…

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That is some kind of sumpthin’ right thar!

I sort of wanted to cry a little. It was so crazy. I’m so not a crazy person. But this was so crazy.

My stylist had to get to her other client, so she left me with her assistant because I didn’t want to leave with straight hair. The assistant went to work with a big barrel curling iron and as she’s curling my hair she’s muttering, “so jealous, dammit. I want this hair so bad.” I told her I was sorry but it was attached to my head. She told me she was going to get the stylist to do it to her because it was so fun. So the curl is done and the assistant drags me out in front of the salon to take pictures for their instagram. Then she took a few shots with my phone.

One more time, Effie…

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So there’s that.

Now, for more real-life photos…

One of the neat things? She did a bunch of teal and magenta shit underneath, so when I put my hair up, you can see all the more vibrant colors. Also, depending on the light, my hair looks like different colors (you can kinda see that in the pictures). And lastly, as it fades, I’ll get kind of a new set of colors, which will be interesting. Sorry for all the blobby white bits…you  know how I feel about privacy. Although, shit, if you see me on the street at this point you might recognize me from the cray-cray hair. Oh well… LOL

So after all was done, I paid up (holy shit did I pay) and after more compliments from the front desk staff, I went out to my car. I locked myself in, picked up my phone and texted Hub… “You’re going to flip your shit!”

Predictably, because my husband loves me, he told me how amazing my hair looked when I got home. He’s kind of a sweetheart like that.

I think, should I get this touched up in a few months, I’d opt for more blue. I like the blue areas a lot. I really would like more of my hair to look like the underside…but there’s always next time.

Also, I left the salon at 2pm. No joke, from 9am to 2pm. My stylist rocked, and she earned her money for sure.

If I had a mic, I’d drop it. I’m all done.

(edited to add a link to the hairy update)

 

 

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These days (on God and faith)

There are days I wake up feeling mad at God. And days I go to sleep feeling mad at God.

I’m not overly religious, but I was raised with religion. I follow many of our traditions but I do not attend services every week. I did not grow up attending services every week. My life now as an adult is pretty close to my life growing up. My family’s traditions and habits stayed with me through the years to now. When my grandfather died, my mother started taking my grandmother to weekly services because my grandmother found comfort in the ritual. And I think it gave my mother special time with her mother. When my grandmother passed away, my mother continued attending weekly services because I think it became comfort to her. She generally attended the services with my father, who only went because she did. Sometimes she went alone, but that was pretty rare.

I do not find comfort in weekly services, so I never got into that tradition. I found comfort in my family. That family is in chaos without my mother.

I’m angry at God for taking my mother away. I’m angry at God for not giving me the ability to heal her. I’m angry at God for leaving me with this emptiness, this pain, this loneliness. I’m angry at God for putting my father through his own personal hell.

I’ve had previous tiffs with God. When I first got sick, I was so involved with being sick that I didn’t have time to think about God’s part in it. When I got sick again–more on top of the first illness–I was tired and I wanted to just give up. I didn’t think about why I was sick, only that I was. But as the years went on and my chronic pain and other chronic issues continued, I got mad at God. Why was He letting me be in pain all the time? Why wasn’t He helping the doctors figure out what was wrong with me and how to help me?

Why did He give my grandfather leukemia? Why did He let my grandfather suffer? And why did He let my grandfather die at only 82 years old? Why did He give my grandmother an eye disease that left her mostly blind? And then the stroke? And the dementia? Why did He let her linger year after year, lost in her own mind, needing others to care for her physical body because she was no longer able? My uncle, my aunt…on and on.

Why the cancer released on my mother’s body? Why did it have to be so aggressive? Why so fast, so hard? Why did it have to ruin her body and her mind at the end? Why did He have to take her away from us?

I know a lot of people who find comfort in their faith. Some give all their problems to God and accept whatever the answer is. I don’t know how to do that. I don’t know how to get past the anger. I’m not saying I spend my days raging at God, because I don’t. But there are days when I sure want to rage and scream and ask WHY WHY WHY. How do I have trust in God and in a universe that has stolen my mother from me?

I watch commercials and I’m angry at kids with their mothers. When I’m out in stores I silently scream at kids with their mothers, wanting them to relish their time together because it won’t last. I’m jealous of Hub, who has his mother in his life. I’m so pissed off that my brothers had my mother in their lives longer than I did. I know these are petty things and don’t change what happened, but they are more reasons why I question God and faith and religion.

So many things in life I can attribute to decisions made by human beings. Why the election results? Too many people made the wrong decision. Why are people being killed in our cities? Too many people make wrong decisions, do bad things, trust the wrong people.

Why did my mother get an aggressive and rare form of cancer that took her away from me too fast and too early? I can’t blame that on a person or a decision. I can’t point to something and say, “oh that’s it! that’s why she’s dead and I’m living my life without her and my father is barely living a life at all…” Who else is there to look to? Who else was there to make the choice to give her cancer and take her away other than God?

Is any of this rational? Is anger at God rational? Does God even care if I’m angry at Him? Does God even care at all? Am I terrible for even asking these questions or feeling these feelings?

Hub often calls himself a heathen. He grew up with religion because his mother (and then his step-father) were religious. But he was very turned off as a youngster by the religious leaders in his community and he moved away from his religion. At this point I think he considers himself to be agnostic, though he deeply respects my feelings for my religion and traditions. These days I can more clearly understand his feelings, though not because of any religious leaders, but more because of my current predicament.

Despite my mother’s faith in her religion for most of her life, I don’t really know how she came to grips with any of this during her illness. It wasn’t something we discussed, mostly because I’m not sure she wanted to think about dying. At the end, I don’t know how much of her mind was still there, so I’m not sure she had time to question her faith. Even when we were at the point that the cancer had spread and there was no other medical intervention available, I don’t really know that she knew that. None of us wanted to say that outright to her, and when she didn’t ask specifically, we kept the information to ourselves. In those final days when her mind was still with her, we didn’t talk about the fact that her death was imminent.

I don’t know how to forgive God for my mother’s illness and subsequent death. I don’t know how to let go of the anger.

 

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Cardiophobia

cardiophobia

Cardiophobia is defined as an anxiety disorder of persons characterized by repeated complaints of chest pain, heart palpitations, and other somatic sensations accompanied by fears of having a heart attack and of dying. Persons with cardiophobia focus attention on their heart when experiencing stress and arousal, perceive its function in a phobic manner, and continue to believe that they suffer from an organic heart problem despite repeated negative medical tests. In order to reduce anxiety, they seek continuous reassurance, make excessive use of medical facilities, and avoid activities believed to elicit symptoms. The relationship of cardiophobia to illness phobia, health anxiety, and panic disorder is discussed.

I had no idea. Did you even know this was a thing?? (edited to add that personally, I don’t actually make “excessive” use of medical facilities…but I do think about how often I go to the doctor and I think about how it would be to go to the doctor every time I felt health or heart anxiety)

I did a bad thing and I googled something semi-medical. I googled “I am afraid of exercise.” And lo and behold, there are people out there just like me, who are afraid of exercising because of cardiophobia. There are other reasons for fearing exercise, but I was mostly focused on the cardiophobia because that’s my issue. Cardiophobia is the main culprit of my health anxiety, although these days I do have some mild cancer recurrence fears, too. By the way, I survived my google espisode and I REALLY only looked at cardiophobia postings…I did not stray or fall down any medical google rabbit holes. Go me.

I had my appointment with my cardiologist this morning. I have mentioned this before, I believe, but I like this man because he’s non-judgemental about my weight and talks bluntly yet kindly when we meet. He listens to what I’m saying before starting in on any exam. He even listened to me when I said I was afraid to exercise because of my heart, and that I was working on it in therapy. He did an EKG which came out fine, then said we hadn’t done a stress test in many years (not since I first saw him probably in 2012 or 2011)…and he said we could do it right away if I was amenable. I said yes, of course, because no time like the present. The stress test was with an EKG and blood pressure cuff hooked up to me, but no echocardiogram like Hub had a week or two ago. The nurse said they only do echocardiograms when there’s a potential structural defect, which the doctor was not concerned about.

The stress test was hard for me. At one point, the BP cuff was so tight (I hate when it starts to tighten, stops, then starts again like it’s starting over…) that my entire right arm from cuff down to my fingers was beet red. I told the tech that the cuff was way tight and she reset it. But those stress tests make you go fast and at an incline on the treadmill and that’s hard. It was already hot in the room and I’m pretty heat intolerant. When they went from high speed and full incline to cool down, I got woozy and I told them. The nurse said that happens and it’ll go away, which is kind of did. Except for the fact that I am having a lot of imbalance issues (like being on a boat rocking up and down) these days, so it didn’t fully go away.

They unhooked me and gave me a cup of water, then the nurse left to consult with the doctor. When she came back, she said they saw no blockages and no abnormalities on the test results, so I was free to go home. Hub was waiting in the waiting room and he helped me out to the car because I still felt overheated and wobbly.

Do I feel better? I’m not entirely sure. But at the very least, when I go in to see T on Friday and we start working on my specific health and exercise anxiety, at least I can say that I was cleared by the cardiologist. Unfortunately, I’m dealing with heartburn again, which had mostly been under control up until about two weeks ago (a lot of this pain is probably the heartburn crap, which I think started out “silently” and is now just getting worse and worse. I’m going to get back onto my digestive enzyme regimen, with the exception of having to find a new digestive enzyme pill because the previous stuff I was using had to be purchased through a practitioner and the nutritionist I was seeing for it refuses to respond to any of my inquiries. I think she’s pissed that I stopped coming in for appointments.

Anyhoo, I’m cleared by the cardiologist. I go in to see T on Friday for hypnotherapy and Neuro-Linguistic Programming. NLP’s creators claim a connection between the neurological processes (neuro-), language (linguistic) and behavioral patterns learned through experience (programming), and that these can be changed to achieve specific goals in life. Apparently NLP is something that hypnotherapists can try to use to help along with the hypnosis. I don’t know squat about it, but we’ll see how things go.

I’ve already had one hypnotherapy session, just an induction where she wanted to see if I could go into a hypnotic state. We tried again on the last session, but I was so mired in grief that I basically burst into tears mid-hypnosis and that was the end of that.

I’ll talk about hypnotherapy in another post soon.

Hub and I started and stopped acupuncture, but are planning to start it again because we both felt it was somewhat helpful for certain issues. We were supposed to start again this week, but my cardiology appointment screwed that up. Hopefully next week.

There’s today’s update.

 

 

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Why am I so tired?

***this post was previously scheduled ahead of time. you might have already seen “Where do broken hearts go” which indicates that Mom had already passed. I wrote this post below a week before her actual passing.***

Normally this would be me asking this, but this time it was Mom.

We wanted to take Mom to see some local gardens today. But this morning was a bad morning for her. When we got her into her recliner in the family room, she said to me, “I don’t know why I’m so tired.”

All she does is sleep and drink, really. She’ll eat bits and pieces of actual food, but mostly she is existing on juice, boost or ensure nutrition drink, hot chocolate, and hot tea. Some water, too. She tells me she’s only dozing, but I think she’s actively sleeping. I watched her some this morning while she slept/dozed, and she made faces, a few noises, but her breathing was fast. I thought it would be slow, but it’s not.

Why is she so tired? Because her body is shutting down. She’s actively dying.

How do I answer her? I didn’t. I shrugged, and moved to talk about what we’re going to do when we get to the gardens today. I had hoped it would be sunny and warm, but for the moment it is still overcast and not quite warm yet. At this point, though, it is what it is. Because in my heart I don’t believe she’ll be able to go at a later point.

My brother from out of state is driving in this weekend to stay for a little while. I had a terrible thought today as to whether he’ll make it in time or not. I know some of that is my anxiety taking over and I tried to let the thought go. I can’t make predictions, I can’t KNOW what is going to happen, I can’t make my brother get here in time or not. I can only get ready to go out today, to show Mom the beautiful plants that she loves so much. Gardening is her thing, she loves plants and trees and everything.

I’m back from our trip to the gardens. It was a long trip, more in the car than in the gardens. I think Mom was happiest that she was outside in the air, even though most of the gardens we saw were inside (as that was where the accessible routes were for the most part). Although Hub went with us, Mom didn’t engage as much as either he or I had hoped. She looked at a few things when we pointed them out, but otherwise she let Hub talk and joke and she just held her head up on her hand. Just like she does at home.

I watched bits and pieces of that hospice video again, trying to remind myself that everything Mom is doing is exactly what is supposed to happen. That although death is incredibly sad, it’s not BAD. It’s what happens next. It’s part of our cycle of life. That sounds like a terrible thing to say, but it’s the truth. I don’t WANT my mother to die, but the truth is, she IS dying. My best hope for her is that there is no pain at any point, and that she doesn’t feel awash in fear or anxiety. I don’t know what else I could hope for.

We brought Mom home, got her back into her recliner, and after a drink of some juice, I could see she was already looking to withdraw into sleep again. I told her good night and said I’d see her in the morning. Hub and I came home, made dinner, and crashed.

I spent some time talking to someone about getting some extra help in the house for my parents (the woman who took care of my grandmother, who now lives in another state). She had some recommendations and suggestions for me, and I’ll take them to heart. I’m hoping that by Monday we’ll have something set up. I hope we can squeak through the next couple of days without too much trouble. I just hope I’m doing the right thing at the right time.

 

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House and $ stress

This year seems to be the year that we’re going to be forking over large sums of money to get the house fixed. WTF.

We had this house built in 2011, moving in in October of 2011. So we haven’t been here for four years even. Before my surgery, we had a walkway put in our back yard for the pooches, along our gardens, because said woofers kept walking through our gardens and not only damaging the plants but also dragging mulch into the house all the time. Plus, they were digging in the mulch AND lying in it. So we decided to have a paver walkway put in, including a small patio area to put a chair and for the dogs to sun themselves on. We also had the same landscaper put in a rock garden along the front of the house so we didn’t have to weedwack around the house, plus we needed to have the areas against the house back-filled and graded away from the house because the builder never did it. And we didn’t want to have water running down against the house and causing us an issue. And we thought with those projects, all was good.

Until we were out front checking out our rock garden in the rain and we saw water pouring down the stone front of our house from the small porch. Instead of coming down the gutter (and out through the expensive underground pipe system we had put in two years ago to keep water from getting into our basement), it was rushing down the porch roof behind the gutter and swamping the stone front of the house. WTF. So in addition to the water potentially getting behind the stone and ruining the house, we also saw that the mortar was cracking from the water. And that there was a stone missing above the porch roof where the water was running behind the gutter. So we started calling gutter people to look at the gutter issue, and stone people to look at the stone problems. For some reason, masons in our area are so busy that they don’t care about taking new jobs. They would not return phone calls, or call to say they’d come out to take a looksie but never show up. Or they’d show up and never give us an estimate. Or tell us they’re booked until the spring.

We found a gutter guy (who had a masonry buddy, who never showed up to look at the problems) who would do the repairs we needed–including fix errors the builder made in doing the gutters around our porch–but we needed the masonry work done first. It has taken us over six weeks to find a mason to do the work (he comes tomorrow), and it’s going to cost us a good chunk of change to fix the current issues, then waterproof the mortar so we don’t have these issues again. Then when we can get the gutter guy to call us back (again, WTF people?), that’s going to cost us.

The end of July, our a/c froze over (the interior coil). That usually means we were low on refrigerant. We know this because a) it happened in our previous house and b) this happened to us LAST YEAR in June. So last June when this happened, the repair guy filled our refrigerant, then said we probably had a small leak and we should see how it goes before deciding to do a very expensive search for the leak. We were all, OOKAY and we were find the rest of the summer. This year we called the guys again and they came out, repeated that there’s probably a leak, but the search for the leak is $500 and would take A YEAR to run. We asked about pumping something into the system that would fill the leak (my parents had this done several months ago by the same company we were using), but the tech said he doesn’t use that stuff and wouldn’t do it for us. Same company, different tech. GREAT. But we figured we’d be good for the rest of the summer, so we paid for the visit and the refrigerant and went on our merry way…until 3 weeks later the a/c freezes over again. THREE WEEKS LATER and we’re without a/c again. And it’s damn hawt. And it dies on a Saturday morning. So we go running around to find a portable air conditioner…finding ONE unit after visiting two big box hardware stores and calling multiple locations. Let’s note the unit we find (and they put aside for us when I beg them to over the phone) has already been opened and taped up again by a previous purchaser… So we fork out the moolah for this beast, which turns out to not really work all that well, as we wait to call the a/c company again on Monday. We muddle through two nights of no a/c upstairs and Hub calls the a/c place at 7:15 am Monday morning. They agree to fit us in that morning by noon and Hub works from home to deal with them as I’m supposed to be accompanying my mother to her oncology appointment where they’re planning to decide what treatment to start next. The a/c guy shows up and says he has a “sniffer” to find the leak, that in his experience it’s either at the exterior connection or on the coil. We ask wy the previous tech didn’t “sniff” out the leak for $130 versus $500 for a year of testing. He said not every tech has a “sniffer”. WTF. THEN YOU SEND THE GUY WITH THE SNIFFER. Ahem. So he calls his next appointment to say he’s going to be late and he “sniffs” out a leak in the coil. He fills our refrigerant to tide us over, then says they’ll call with an estimate for labor, as parts should be under warranty. The office calls to quote what sounds like an exorbitant amount, and Hub and I weep over an a/c system that isn’t even four years old and is broken like this. I insist that Hub calls other a/c companies to get estimates for the repair and he finds someone who can do the job for about 30% less. They come out two days later and insist there’s no leak in the coil (they do a nitrogen AND a vacuum test, saying THOSE tests work better than the sniffer — again, WTF) but that they found a small leak at the connections outside. They seal the outside connections, refill the refrigerant they had to take out to do the tests, then charge us for the tests and the refrigerant, which is less than the coil replacement but still, more than we wanted to have to fork out after having forked out for 2 pounds of refrigerant and 2 visit charges over three weeks’ time.

We figure we still have the mason and the gutter guy, but then we’re done bleeding money. Yeah, fat chance. Saw that coming didja?

Thursday morning I’m hearing dishwashers running as I’m hanging out in the family room. And the noise seems to be going on for an awfully long time. So I ask Hub, who is at work, did he run both dishwashers at once (we have drawer dishwashers), and he says no. He only ran the top drawer of the two, which is the one we use the most. So I go check and I see that the bottom drawer is running, making lots of noise, and when I open it there’s water in there like it was on the dry cycle. So I ask Hub again, “You sure you didn’t run both and just don’t remember?” He swears he didn’t touch the bottom dishwasher. So it started on it’s own… This is the dishwasher that the controls basically don’t light up anymore, even though we rarely use it. So we have to press buttons on it, then assume we got the right buttons when we hit the start button to make it run. Ya’ll, we had this house built less than four years ago, and yet … so many issues. But we’ve been ignoring the issue with the bottom dishwasher because…we rarely use it. But if it’s going to run on its own, we have a problem. At the moment, we’re ignoring the problem. We thought we were getting away with something until…

Yeah, you think you know, but you have no idea.

So Saturday, Hub and I are running errands and he wants to stop somewhere to get a milkshake, but I’m too hot and too tired, so I make him go home instead. An hour after we’re home, I figure I’ll try to make him a milkshake, so I go to the fridge and yank open the bottom drawer freezer and pull out a container of ice cream….and it sloshes. I feel it slosh around before I see it. And I turn it over in my hand (top still on, obviously), and through the clear plastic container, I see the ice cream moving around like it’s chunky milk (it has nuts and chocolate chips in it). And I say, out loud, really really loud, “SHIT.” We bought this refrigerator the same time we moved into the house, so it, too, is not even four years old. In addition, less than a year in the house and the freezer got really frosted over. So we called the manufacturer and after multiple visits, the head repair guy for the manufacturer said the motherboard had a faulty program and wasn’t running the defrost system properly, so our compressor fan was frozen over. He replaced the motherboard (only it turned out to be the SAME motherboard and not the new one, so they had to come out and do the replacement TWICE) and things have been fine. Until now, with our sloshy ice cream. So when I’m cursing, Hub comes over and says, “Hmm, my milk didn’t seem so cold this morning at breakfast, but I didn’t think anything of it…” Fortunately, we have a second smaller refrigerator in our pantry for overflow, and a medium size chest freezer that we use because we buy food in bulk. So we start moving all the ice cream (which we’d bought on sale which I think is now RUINED because it got soupy and then refroze) and the frozen fruit and the dog’s homemade ice cream and the frozen coffee into the big chest freezer. Then we start moving all the food from the fridge in the kitchen into the smaller fridge in the pantry. We cram everything into the pantry fridge and, cursing, I go look for the extended warranty paperwork (we smartly bought a five year extended warranty for this piece of shit). I find the paperwork, go to the website and register a claim. But it’s Saturday afternoon, so you know ain’t no one working there.

Ya’ll, I’m tired. I’m tired of stuff breaking down. I’m tired of having to schedule repair people, get estimates, get work done, follow them around to make sure it’s actually being done (yeah, had THAT happen). I’m tired to trying to figure out who is telling us the truth and who is lying. Who is charging us properly and who is looking at our (mostly) newly built house and thinking they can take us money-wise (you wouldn’t believe the range of estimates we get from some of these places). I’m tired of chasing these people around when they don’t return calls, or don’t follow-up, or don’t SHOW up. It’s tiresome. I’m tired.

We thought when we had this place built and put research into the major systems and appliances, that we’d get a break from this repair bullshit. Not so much. The first year (or two) it was manufacturer defects, builder issues, replacement issues, warrantied issues. Now it’s the same shit we had at our previous house, only it’s on items and equipment that are new and shouldn’t be HAVING these problems…and that makes it all the more frustrating. At least when you’re a/c is 20 years old and it breaks down, you figure, enh, was bound to happen after 20 years in service. When it’s less than 4 years old and it’s breaking down for the 3rd time in a year, you’re thinking WTF.

Ugh. Tomorrow morning, if the fridge warranty place doesn’t call by noon, I get to chase them down. Woo.

 
2 Comments

Posted by on September 4, 2015 in angry, anxiety, overwhelmed, stress, tired, trust

 

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Rinse and repeat

So here I am, just days away from surgery number two. I wrote about my pre-surgery nerves in this post last time. I’m feeling pretty crappy these days, some of which is because I haven’t been sleeping. I’ve been having nightmares and I’ve felt overheated at night. I’m terribly heat intolerant, so it keeps me away and/or wakes me up when I’m too warm. And of course, if I’m warm when I try to go to sleep, then I can’t fall asleep. So it’s been sucky sleeping lately. Not a great way to go into surgery, I’m sure. Also, my throat has been dry in the mornings and my nose feels stuffy. I’m hoping it’s allergies, because I can’t take the thought that it’s a cold, which might (or might not) postpone my surgery. No fever, so I feel like just a cold won’t be an issue, but my anxiety makes me worry about it. Repeatedly and often. Woo.

In my previous post, I talked about all the prep work I was doing in advance of surgery. I re-read the post and feel kind of embarrassed at how much I was doing. I made all that food and ate none of it. I got all that yarn and used none of it post-surgery. I borrowed all those books and it was over a week (or more) before I could read anything. I used almost none of the things I packed to take the hospital. Even so, some of it was worthwhile. I’ll be changing and washing sheets in advance, because I like the comfort of the laundry detergent when I get into bed. Hub will be getting me deli turkey and making me gluten free biscuits because those were the two things I ate for the first two weeks, almost exclusively (great diet, eh?), along with plain water. So no soup, no lemonade, no mushrooms and cheese…that was all a waste of time the first time.

I’ll pack my small bag for the hospital with pain medications (leftover from the first surgery, so we don’t have to pay for them a second time), my gluten free chewing gum (peppermint, to get my stomach working again), and my pillow for the ride home. I’ll have my lip balm and my cell phone and my advanced directive (again). That’s pretty much it.

I’m still going to the library tomorrow, so I don’t have to go soon after surgery, but I know now that reading will be nearly impossible the first week. Even watching television was nearly impossible, because my brain just wouldn’t focus.

And on top of things, I’ll be worrying about surgical menopause. Woo hoo. There are horror stories about this, and I’ve been trying really hard not to read them. I talked with T about them at my last session, but I’m not sure I can be reassured about this. I’m mostly worried about the insomnia…and then the possibility for increased depression and anxiety. There’s a whole host of new symptoms for SM that I’ll have to learn, and that my health anxiety will have to feed on. I’m wondering if acupuncture might help. I’ve been trying to read about it, but I know full well that acupuncture doesn’t always work for everyone.

I finally saw the massage therapist last week. It was so nice to have her work out some of my muscles. I wasn’t able to lay on my stomach, but she was able to work most everything while I was on my side. I can’t say how much it all helped long-term, but it felt really good during (with the exception of the trigger points which generally hurt like a mofo). I really hope I’ll be able to get back to her more quickly after this surgery than after the first. My muscles really took a beating after surgery.

No matter the fact that I went through this surgery (basically) once before, I’m nervous. I know now how it is going to feel to wait in pre-op…and how I felt in the post op, and how gross and out of it I felt in recovery. And on the way home. And the immediate days following. I made it through, obviously, so I get that, but it doesn’t mean it was easy and/or no big deal. In the back of my head, I’m also thinking about actually making it through the surgery. I’m afraid. I don’t know another way to be at this point.

My PVCs have mostly dropped off in the last two weeks or so. I had some last night, but they were mild and didn’t last very long. I hope that continues, because I can do without those.

 

 

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Here’s where I wait

I had my doctor’s appointment with the gyn/onc surgeon. My parents came with us to try to help me listen, but in the end there wasn’t much new to learn at that point. He had no further information on the cancer, because he didn’t have enough information from surgery as cancer was not the expected outcome. Mostly what the doctor wanted to talk about were options for next steps. They were:
Do nothing…wait and watch — not really much of an option for me. There’s cancer, it has to be addressed somehow.
Go for treatment…radiation and chemo — with the hopes that whatever is in there would be killed by the treatments. But the exact treatment would be a guess, since we really have no idea what’s left inside me.
Go back into surgery…take out ovaries and tubes, sample lymph nodes, do a pelvic wash — only this option allows him to stage the cancer and plan an appropriate treatment.

Without hesitation, I took the surgical option (DaVinci robot assisted laprascopic). As much as I don’t want to go back into surgery and/or deal with (bowel prep again!) recovery, I also don’t relish the idea of going through treatments that might not really target whatever is going on. Fumbling around blindly does not sound smart to me. So surgery it is going to be…but they won’t do surgery for six weeks after the last surgery. And on top of that, when I went to schedule it, they wanted to wait until AFTER six weeks. Which meant from the time I went into the appointment until the new surgery date, it’s over four weeks.

Four weeks to sit and wait…and do absolutely nothing. Well, now it’s three, so I guess that’s a step in the right direction.

The cancer is grade 2. I asked for and got a CT scan on Friday that showed “no evidence of metastatic disease” so that’s also good news. Bad news was that because they didn’t expect to find cancer, they cut up the uterus inside me (in a bag to keep any potentially errant cells contained) so identifying how far the cancer might have gotten into the uterine wall was difficult for the pathologist. The report says “superficial” advance into the wall, but then goes on to state specifically that it was hard to determine because the uterus had been cut up. I don’t know how they will properly stage the cancer if they don’t have that information, and I forgot to ask.

As I said in my previous post, I don’t really know how to trust the things being said at this point. I heard all those nicey nicey things during my mother’s early appointments, but once she got her surgery and the cancer was staged, it was much more advanced (and more aggressive) than they had first anticipated. So I don’t want to get my hopes up, and that leaves me in a low spot…worrying.

The first couple of days I cried myself to sleep. Hell, the first week I spent crying on and off, and crying myself to sleep. There are things going on around here that I want to be present for, but the cancer and the surgeries are messing stuff up. My niece is getting married in the fall, and her bridal shower is in July. Unfortunately, with the next surgery scheduled, I’m already having to decline the invitation to the shower because it will be just over a week after my surgery. Based on my first recovery, there is no way I’d be able to handle that, physically or mentally. And as my mother pointed out, I might not be able to make it to the wedding in the fall (out of state and a looooong trip) if I’ll be needing treatment. I don’t think she was thinking when she said it, but she kind of blurted it out and that sent me into a spiral of crying again.

I just want to know what I’m facing. And in the meantime, I don’t know how to be normal and do normal stuff. I just feel afraid and lost and helpless. I’m still spending time doing much of nothing…staring out the window, staring at the television. I read a book the other day, but no crocheting. I just sit and zone out…and try not to wonder and try not to what if…

I’m still not sleeping well, so I’m tired all the time. I’m having terrible nightmares when I do sleep. My body hurts so much…my legs, my back, my neck, my arms. Every part of me is so tired and so achy and so painful, tense, sore. It’s a struggle to move around, it’s a struggle to do much.

 

 

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