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Jet plane, night 3, day 4

Yesterday’s blather.

My brother (#2 with the cray-cray ex) called me last evening to see how I was doing. I was kind of surprised but pleased, because I didn’t expect it from him. My father has been checking on me by phone, too.

I did okay last night, though I stayed up late again. I didn’t have any snake nightmares that I remember, but I was so damn exhausted when I turned off the lights and TV that I probably didn’t have the energy to dream. I was up on time to feed the dogs this morning and take them out. No sign of the snake, but I didn’t hang around looking for it either!

After that, I went back to bed, hoping that I could waste some hours by sleeping. I dozed on and off for a couple of hours, but Butthead decided I needed to get my ass out of bed (bark bark bark bark bark bark), so I gave up. Today was the slowest and least active day of the four. I didn’t cook anything or bake anything or clean anything. I ate soup for lunch and leftover takeout food for dinner. And I had gelato as a snack this afternoon because I wanted it.

The snake repellent showed up via Amazon one day delivery. I immediately took it out and sprinkled the smelly crap all over the garden and bushes up against the house. I think the smell kind of freaked out Butthead, but that doesn’t take much. I have no clue if it’ll work, but I guess it makes me feel slightly better to try doing something.

I went to visit my father (which I’ve done every day over these past four days) and spent a little time chatting with him. I talked to Hub a few times, but he’s been busy site-seeing and hanging out with his father and sister. Soon he’ll be on the plane heading home…and I couldn’t be happier. I hope the flight is swift and easy and he can rest as he wings his way home.

Took the dogs out at 10pm and saw no snakes. That was good news. Of course, I let them pee and hurried them back into the house. When Hub is home, he allows Le Moo to lounge on the patio for a while at 10ish, but I wasn’t letting her get away with that. Especially with the potential for snake-lurking.

I’ve got half a book to read, so once it’s done I’ll turn out the lights and try to sleep for a couple of hours. I have my alarm set to get up in the morning and to call my father to wake him. He’ll drive to the airport with me to pick up Hub, since I don’t like to drive the interstate to get to the airport. I mean, I could do it, but I don’t like to and my father likes to help when he can.

I’ll feed the mutts before we head out in the morning, so once Hub gets home he’ll be able to crash and try to get some rest and hopefully ward off too much jet lag. I can’t wait for this night to be over.

Thanks for sticking with me, ya’ll. I really blogged this week so I can remind myself that I was able to do this if I ever have to look back. But honestly, it did help to know you all were rooting for me, too!

Onward with night 4. It leads to a homecoming.

 

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Paying homage and giving back

I know I’ve talked about these bears and dolls before…

I’ve been making them for almost a year–maybe closer to 10 months–so that I could donate them to our local police department for children in trauma situations. I had stopped making them for a few months because of my pain and health issues, but last month I finished up a few more bears so that I had an even number of dolls-to-bears ratio to donate. I then returned extra yarn I had to force myself to stop waiting on doing the donation by trying to convince myself that I just need to finish up those couple of skeins (I literally had enough yarn to probably make another 10 or 15 bears).

So last week, Hub and I put all 30 stuffed toys into the mini-van and set out for our local police station. When we finally found it (who hides a police station? Yeesh…we had to ask a random sheriff we spotted near the court house for directions), we gathered the three big bags and went into the station.

I’ve never been in a police station before, so I wasn’t sure what to expect. As it turns out, the station is actually on the newer side and seemed modern but dark. There were two women behind a huge, thick glass window and I went up to talk through the little speaker. The woman I was talking to seem surprised at my explanation, then rushed to say she didn’t have any tax deductible donation slips. Once she was convinced that this wasn’t about that, she made her way through a series of doors to join us in the lobby to take the bags. She seemed really pleased and said that most people try to bring in used toys or toys without tags (so they wouldn’t be sure if they were new) and that was a health risk, so they can’t take those. But since these were hand-made and obviously new, she gathered up the bags from us and told us how nice this was of us, and that she was going to take them straight to the administration offices.

We thanked her for her time, asked her to pass along how appreciative we are of the officers who take care of our community, then we left. She never asked for my name or anything else. I wanted to make this donation in honor of my mother, so that part made me happy. But I was sad to bring closure to that project. I’m not sure if I’d do it again with those particular patterns, as they are more tedious than I can handle these days.

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Hub took me for ice cream at a local shop in our downtown historic area, then we went home. The next day was the anniversary of the day my mother died. In honor of her on that day, I ate cheetos and chocolate marshmallow ice cream I’d made for her that she didn’t get to finish. Those were two things she ate a lot of in the last couple of years of her life. (I didn’t eat them together, of course!)

I’m glad to have done a little something to give back to my community. It’ll be odd if I happen across a child holding one of the toys, but no matter what I hope it helps someone somewhere.

 

 
 

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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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Too much or too little?

I had a session with T today, which was kind of all over the map. Part of what I wanted to talk to her about was V (pt 1 and p2). I haven’t written much about my sessions with V because I haven’t felt like we’ve done what I wanted to do. Very specifically, I approached and began seeing V so that I could attempt to do hypnosis with a therapist who specialized in it, versus seeing a hypnotist who had no therapeutic training. I was looking to get assistance with my insomnia type symptoms (I say “insomnia-type” because I don’t feel I have true insomnia, I just have shitty sleep), which was something V said initially she could help me with. In the end, she preferred not to use “hypnosis” and instead went with “breathing and relaxation” techniques to work with me. As well as EMDR.

I’ve had seven or eight sessions with V, and while I did discover where my “not enough” feeling came from, I haven’t had any progress with my sleeping. And I haven’t felt any other progress, nor has V seemed interested in pursuing hypnosis. I also feel very uncomfortable that at least once a session, she’ll say she’s not sure if X will work, or that she also struggles with sleep but I shouldn’t be concerned it will always be that way for me. I just feel like I’m talking to a therapeutically trained ME. And I don’t want to talk to me… It sounds weird, but that’s how I feel. So I pretty much had decided to discontinue sessions with V, but I’ve never…fired a therapist before. I didn’t want to make V feel badly because I didn’t want to continue. I know it isn’t my issue and she is a professional, but honestly she feels so insecure to me that I hate to feed that feeling by firing her. But I’m not getting what I want from her and I don’t want to continue if that’s the case. I already have T–who works well for my on-going needs–I don’t need another regular therapist.

So when I sat down after dinner, I crafted a short but complimentary email, and after re-reading it a couple of times, I sent it. Now I wait to hear back. Unh.

My plan, at this point, is to give acupuncture a go. I’ve had it before and although it didn’t help at that point (for horrendous menstrual cramps about 16 years ago), I know it does work for a lot of things for a lot of people. I just need to work appointments into my schedule, because I know acupuncture is an on-going treatment that often works better with multiple appointments per week, or at least one every week for a lot of weeks. But I definitely want to give it a try, for the fatigue/insomnia as well as chronic pain. T approved of the plan I had set out, and reminded me that I need to keep myself balanced or I was liable to break down.

That was the other conversation I had with her. I wanted to really find out how I know if I’m just avoiding everything by trying to stay busy and/or zen/zone out. I know in my heart that I’m feeling the emotions relating to my mother’s illness and the situation we are in. But I am concerned that maybe I’m not giving my emotions ENOUGH attention. How do I know? How do I know that I’m not mis-using my coping skills for avoidance purposes? She said there’s no answer that suits everyone. To try to pay attention to whether I’m avoiding things that need to be done or dealt with by using my coping skills, or if I’m still addressing things while fitting my coping skills into my life. And that if I spend more time coping/avoiding some hours/days/weeks, that I shouldn’t be too concerned.

I’m not well known for allowing myself to be emotional, so I worry about me avoiding or repressing the emotions surrounding what is happening daily. I just can’t decide what feels right and balanced. T tells me to quit worrying about it. Seriously, has she met me? ­čÖé

 

 

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Cleanliness is next to…

…guilt-iness.

You thought I was going to say something else. But nah, that’s too normal. And as far as I’ve been told, I’m not really anything near normal.

You know about my Mom. She’s not able to do very much right now, which includes cleaning, even though she’s feeling a little bit better. My childhood is made up of memories of weekend cleanings. That was what we did on the weekends…cleaned the house. Cleaned the yard. Cleaned the laundry. Etc. I always felt my mother was super-mom, because everything was always clean, even when she worked full time and took care of her husband and four children. She always made dinner after she got home from work. There were no dust bunnies, no dirty bathrooms, no laundry tossed on the floor. This was how we lived. I didn’t give it much thought growing up because it was how I was raised and how I lived. That didn’t mean I liked it, but it was how we were. Not to say that my room wasn’t always a mess, and she was always telling me to clean it up, but the rest of the house was…so clean.

No matter what house they lived in, how big or how small, my mother kept it clean. When I moved out on my own, I became intimidated by how clean her house always was. I started worrying about how clean my house wasn’t, especially when someone was coming over. If I knew my mother was coming to visit (from a whole 30 minutes away), I would spend an entire day cleaning the house from top to bottom, to make sure I wasn’t embarrassed when she came in. Did she ever inspect? No. Did she noticed if it was clean “enough”? Probably not. But that was how it was for me…worrying about being ashamed of how clean my how wasn’t.

When I got sick and couldn’t clean, it was left to Hub. Which kind of meant the house was sort of clean. It was never as clean as my mother’s house, and I almost always had to ASK him to clean, but he tried his hardest. And I tried not to freak over it. I’m not a neat-freak. But I do have a thing about clean bathrooms and a clean kitchen. At some point I told my mother that there was just no way I could vacuum and mop and keep the house spotless for her visits. She very bluntly said, “Who asked you to?”

So at that point, I started relaxing about the dog hair. About the dog drool. The doggie footprints. The grass she dragged in on her fur. I still wanted the bathrooms and kitchen cleaned, but I wasn’t obsessive over it. When Hub got a bonus one year, we tried to put the money aside to have someone come clean the bathrooms and kitchen, but I was never happy with the results. We tried several different people, but I always felt we could do a better job and it didn’t cost us precious money that we could have used elsewhere. So we stopped trying new cleaning people and went back to our old routine.

My grandmother had a cleaning lady who came once a week to do the heavy work. For many many years. It was a luxury she felt she wanted to afford. That was back in the day when cleaning “lady” mean someone who really cleaned, who kept her clients for years and years and years. Not someone who zipped in and out, just making a few extra dollars. But my mother was tight with her budget, and never wanted to hire anyone. I think it was part of her identity to keep a clean house, and to make sure her family was always fed, even when she worked full time.

So now, here’s Mom, who can barely get around, and whose energy is pretty close to nil. And my father, he never had to clean because Mom always did it. So when Mom went downhill with her health, I went to her and said I wanted to hire someone to come in and clean the big things…scrub the kitchens and bathrooms at least, maybe run a vacuum on the stairs because that’s difficult to do. She seemed almost relieved. She said the bathrooms were beginning to smell, but she told me that she would only do it if we did it, too. I think she was trying to gift me something because of all the time I was spending at her house. So I said sure, we could “share” a cleaning service. They could spend a few hours here doing our kitchen and bathrooms, then go to her house and do the same. So I set about looking for someone. In the meantime, Mom told Dad what we were doing. And Dad got mad.

It’s been a couple of weeks since we talked about getting a service in to clean. As we speak, there are six women cleaning my house. Doing more than I asked. Paying no attention to our big dogs or the fact that there are tumbleweeds of dog hair all over. They’re flipping up couches, cleaning my laundry room (even though I said not to bother), and they’re making the house smell so good. (Sorry, got distracted. Heh.)

Dad got mad. He told my mother HE could clean the house, why were we bringing someone in. So she told him the bathroom smelled, and it would be easier on everyone if someone came in every two weeks and just did the hard scrubbing. He got upset. Said he could handle it. I tried to tell him it wasn’t that he wasn’t doing a good job, it was that this was something someone else could do, so he could focus on Mom. It was supposed to be a relief…something to take off his shoulders and his mind. Instead of reassuring him, it upset him further. When I would go over to see if they needed anything or to spend time, I’d catch him running a small vacuum in the kitchen. Mom told me she could smell the Comet he used in the bathroom…but then she’d tell me he had no idea how to clean a bathroom. That he missed inside the toilet under the rim, or outside the toilet, or the top of the toilet tank. That he was trying, but he’d never had to do it, so it wasn’t his fault that he was missing things.

I tried again to tell him this was a good thing. That someone else could focus on the heavy cleaning and he could focus on Mom. He’s still mad. Soon we’ll be taking the ladies over to Mom’s to clean, so I called to warn them we’d be over soon. He answered the phone. He’s still mad.

Honestly, if this crew works out, I’ll be happy. I hate cleaning, and I most importantly hate cleaning bathrooms. The scrubbing is too hard on me, and although Hub tries, he’s not really good at it, either. He never cleans behind the hinges of the toilet seat. It’s just…gross. At the moment, although I know they may have missed a few details, these women are working hard and doing a ton. I’ll be okay with pointing out (next time) what I would like them to focus on better.

I’m sure the house will be messy again soon. We have dogs. I have a husband. It’s bound to happen. But I can’t wait to go pee in that clean bathroom. I might have to drink an entire glass of water so I can go pee in another clean bathroom. Jeezus I’m weird. Don’t tell anyone.

I am trying really hard not to feel guilty about having someone else clean parts of my house. Cleaning was part of my Mom’s identity, but it isn’t part of mine. I will admit, though, that I did get up to sweep the dining room after the women got here. Plus, we spent a day yesterday de-cluttering so that the women could do a thorough job more easily. So yeah, we’ll have to learn to de-clutter before they come for their appointment to clean–which is also weird…who cleans before the cleaning people come?–but it’ll be a good habit to get into I think.

So, now I’m adding on to the post because the cleaning crew left. When I say crew, I’m serious about that. It was seven women, including the owner, to do both houses. And before you pass out, yes, both houses are kind of big. We didn’t expect them to clean the whole house (either of them), but they came pretty close. The owner says for the first appointment, they like to be as thorough as possible so that subsequent cleanings will be easier and faster. And subsequent cleanings will not require seven people.

They did a pretty good job. I didn’t get to inspect everything, and I know there are a couple of spots that didn’t get done the way I would like, but I hope to give them another opportunity to come in and clean again. Also, it was a little creepy because they remade our bed. They fixed the pillows up against the headboard, then remade the bed. Like my mother when I was younger and she didn’t like the way I made my bed. LOL Also, it is a little frustrating for me that they moved things to clean and then didn’t put them back in the right place. I know it’s petty because they touch a lot of stuff and can’t be expected to remember where everything goes back in everyone’s house, it’s just weird to walk into the room and see your nightstand completely rearranged. Or your desk.

Hopefully Mom feels better with her house cleaned. I know at least I don’t have to think about it for the time being. Of course, an hour after the cleaners left, Butthead drooled on the clean tile floor. *sigh*

 

 

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Guilty is as guilty does

I know that doesn’t make any sense. I just had no other way to title this post.

I had to cancel my baby toof extraction because my incisions were looking bad and I watched to tear the flesh from my stomach because they itched so bad (for days on end, prior to even seeing the surgeon/gyn onc the week before). I had left a note for the surgeon over the weekend, and on Monday they said “they’re healing, no worries!”. But by Monday morning, I knew they weren’t right, so I made an appointment with my primary doctor (who is ten minutes from my house versus over an hour to the surgeon/gyn onc, an hour to wait to see him, and then over an hour home) for the following day. She took one look at my incisions and put me on 10 days of oral antibiotics PLUS topical antibiotic ointment. Let us not forget that I already DID seven days of antibiotics for the UTI that I had finished just the week before. So I’m back on antibiotics (another four days) and feel nauseated and my mouth tastes terrible all the time no matter what I do. I saw my primary as a follow-up yesterday and although *I* don’t see much improvement, she was happy with how the incisions looked. And as a matter of note, she said if she had seen me like this last week, she would have suggested that I was allergic to the dissolvable sutures the surgeon used. I asked how long before the sutures dissolve and she said SIX WEEKS is the norm. Ugh. I’ve been through the standard with Hub and my antibiotic pills…he’s stayed with me for half an hour after each pill until yesterday. Yesterday was the first day I took the pill alone.

Tomorrow we take Butthead to get her ligament surgery. We’ve been able to keep her pretty quiet 97% of the time. I kind of think the pain medication has been keeping her quieter than usual, but whatever. She’ll be in surgery for probably two hours tomorrow, then in recovery. I hope we’ll have her home in time for dinner, but we’ll see how it goes. Also, tomorrow is the first time I’ll have a chance to tell my uncle (our vet) about my cancer. Not looking forward to that convo, but I want his family to know.

On to the guilt…

My mother got the results of her PET scan (I went to the appointment with her), and unfortunately it wasn’t good news. Although the lymph nodes that were targeted by the radiation shrank, they didn’t go away (or back to normal size? not sure the terminology)…and there are new lymph nodes showing up in her neck, sternum area, and the back end of the pelvis. There’s no potential for cure anymore, only the possibility of shrinking the nodes and extending her life. We’re going back to looking into clinical trials (including potentially gene therapy) for treatment. This shit is so aggressive, and now that it’s in her lymph system, it’s going to keep moving around. This was just a couple of months since her last PET scan. And the initial recurrence after her chemo was three months. It’s so freaking terrifying, I can’t even find words for it. I know that it’s possible to live┬ámany years with cancer, if the treatments available can keep the cancer at bay, but it requires continuous treatment, basically. But I’ve spent many moments trying to push out of my head the thoughts of what might happen to her…what might be her path. What her quality of life might be. What suffering she might have during this journey. If I think too much, I would be constantly in tears. I do my best to push those thoughts away and stay in the moment. It’s been particularly difficult during my recovery because I don’t have a lot to do with the energy and stamina I have at the moment.

I feel guilty that my path with cancer is presently so much shorter and with a better outcome. I feel guilty that as I got good news, she got bad news. I feel guilty that I’m not able to spend much time with her right now as I recover. I feel guilty that I’m not able to be the cheerleader and distraction-person as I recover. I’ve been mired in my own issues with recovery and have barely seen her (though we talk on the phone several times a day). I feel that I am failing as her support. I doubt highly she has any of these thoughts, but I do. They are my constant companion these days.

I have been pretty lucky so far with the surgical menopause. I had one hot flash and luckily Hub was with me and I knew right away what it was. That doesn’t mean I didn’t clutch Hub’s hand for dear life, but it was over relatively quickly and it hasn’t happened yet again. I still get cold and hot (I pull the covers over me and then throw them off repeatedly all night) a lot, but I can deal with that. I haven’t been terribly over-emotional or moody, though I’ve had a pretty constant headache which could be hormones or it could be the antibiotics. It still very possible for the symptoms to ramp up, but so far it’s been very manageable.

 

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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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