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Category Archives: judgement

Don’t pigeon-hole me

I had a very very bad night last night. Even before I was ready to go to sleep, I was feeling uncomfortable. My hands and arms were tingling, or feeling like they were going to be tingling, and no amount of moving them or rubbing them or moving around made it better. Hub went off to sleep, with an early morning alarm to go to an on-site meeting that required a two hour commute (each way). I sat up for a while because my right elbow started hurting. Then my left inner arm starting hurting. The tingling was still going on in both hands. I was so unhappy. I couldn’t lie down and get comfortable, so I kept sitting up in the dark (I had turned the TV off by about midnight in the hopes that I could go to sleep). I was rubbing my hands and bending my elbow repeatedly.

And I did the worst thing I could do. I thought I remembered that pain in your elbow was a symptom of a heart attack, so I looked it up. And it was…and I knew immediately I’d made a mistake by confirming that, and I turned my phone off immediately. I tried again to go to sleep but now both arms were hurting, the elbow, all the tingling, and my body was getting weary from sitting up for so long. I hadn’t slept a wink.

At one-thirty a.m., I had a panic attack in my pitch black bedroom, with my husband snoring beside me. This panic attack in particular consisted of violent trembling of all my limbs. I knew what it was and I let it come because I had hoped it would tire me out and let me give in to sleep. Instead, all the symptoms I’d had before the attack were still there…and I still couldn’t get comfortable enough to sleep. So I sat up for another hour or so and ended up with a second panic attack. Same violent trembling and fear, with all my pain symptoms still hanging on afterward.

So I woke Hub up and told him I needed to call an ambulance, because I was feeling really poorly, I felt short of breath at that point, and all my other symptoms remained. While he got dressed and went to the bathroom, I pulled on some clothes and tried to get downstairs to wait for him. He called 911, requested the ambulance, then called my father so he could take care of our dogs. It was about three thirty in the morning.

I wish I could say the EMTs were kind and compassionate when they arrived, but they weren’t. The lead guy started asking me what was going on, and I told him. He immediately asked me if I had any history of anxiety…which I said I did, but that it was well-controlled most of the time. And that my symptoms had all come about prior to any feelings of anxiety. He told me to follow him to the ambulance–Hub helped me out through the garage while the EMT just walked off–and told me to get in through the side door (again, Hub helped me up the steep steps). Inside the ambulance, the EMT hooked me up to the blood pressure cuff and oxygen finger thingy, then started asking me questions again. He kept telling me that my tingling and pain could be from anxiety, and I kept telling him the tingling and pain were PRIOR to me feeling anxiety. My vitals were pretty high, so he directed me to work on my labored breathing while he filled out some chart and told me he and his partner didn’t usually work our local area. As my vitals came down a little, he announced that maybe I wanted to just go back in the house and let them go back to the station. “We’re not in the habit of kidnapping people and taking them to the hospital if they don’t want to go…”

I just stared at him. I was giving him information on “bilateral” arm pain, shortness of breath, tingling in both arms and hands…and he was telling me to go back to my house. I told him in no uncertain terms that I was very familiar with my anxiety and that this wasn’t anxiety…and that I wanted to go to the ER to find out what was going on. He kind of sighed and said, “okay, but you need to keep working on your breathing and anxiety so once the doctor sees you, they can evaluate you without the anxiety in the way.” Then during the ride to the ER, he asked me, “how many times have you done this? gone to the ER in the ambulance?” I said, “this is the first time.” All he said was, “Oh.”

WTF.

At the ER triage, he told the nurse FIRST that I had a history of anxiety. During his recitation of my history and presenting pain, he told her at least two more times that I had a “previous history of anxiety”. They took me to a room and told me to scoot from their gurney to the hospital room bed, then said, “the nurse will see you at some point.” and they left.

Hub FINALLY found me a few minutes later, without any assistance from any of the nurses or the EMTs, who were all standing around chatting at the nurses’ desk. We sat in the room and waited for about half an hour (or 45 minutes?) before the nurse and PA came in to see me at the same time. The PA started asking me questions about how I was feeling, then looked at the computer and said, “You have anxiety issues?” I said yes, but that this was not the anxiety, that I have been managing my anxiety extremely well for quite some time–the PA looked at Hub as if she was expecting him to argue with me, but he confirmed what I was saying. So the PA said, “why don’t you let us get you started on some fluids and some anxiety medication?” I said, “no, I don’t take medication for my anxiety. I manage it without medication.” The PA looked dumbfounded, and wanted to know what she was supposed to do. I told her that I was afraid the pain was symptomatic of a heart attack, and I wanted her to check to see if that’s what was going on…or if it was something else and WHAT the something else might be. The PA asked again about giving me anxiety meds, or something for the pain in my arms. I said I didn’t want pain meds (which she told me would be anxiety medication anyway), that I had anxiety medication at home but that I didn’t take it. Again, I got a look from the PA that said she was sure I had lost my mind.

At this point, the nurse stepped in and said, “oh, I do the same thing. I carry my klonipin with me all the time, but I haven’t used it in years.” The PA looked both confused and annoyed at that point.

The PA said, “I can do a whole work-up, but your history says you had an EKG in June with a stress test and that’s the GOLD STANDARD. So if it was clean, you really don’t need to do anything here.”

I told her I wanted to know what was going on, what the pain was and why was I feeling really poorly. So she said she’d order the EKG, bloodwork, heart enzymes, and a chest and neck xray to see if there was anything going on there. She left the room, and seriously? That was the last time I saw her. We were there for another two and a half hours and she never came back into the room. Neither did a doctor. The nurse took care of us, did the EKG and told Hub about thirty minutes later that an attending said it was normal. She did the blood draw and then told us about an hour later that the results were all clean. She took me to get the xray (because their orderly was MIA) and she was the one who came back to say the xray was fine and I could go home. In the time we were there, she was in and out of our room a lot, talking with us about her history of anxiety, and how people who had never dealt with it didn’t understand. That she knew what I was saying, and how I was feeling about the meds, and how she understood that I was identifying pain not associated with my anxiety.

I felt so demoralized by the EMTs, the PA, and the other staff there (not including the good nurse). I am very open and honest about my anxiety. I feel it’s important for medical personnel to know my history in full, which includes my anxiety. I’m so disappointed that doing so in this instance gave the EMTs and the PA the reasoning (in their minds) to shove me aside, to not take me seriously, and to abandon my care.

We were released from the hospital and got home around six forty-five in the morning. Hub had to bow out of his meetings, he retrieved the dogs from my father’s house, and we both went back to bed. I slept for about two hours, then dozed fitfully for a little while after that. When I woke up and went downstairs to have some lunch, I found that I still had all the same symptoms as the night before. The tingling comes and goes–and is in my legs and feet and sometimes in my face–my back is hurting, I’ve had a headache on and off. I don’t know what’s going on.

Hub reminded me today that fall is usually when I get a pretty bad flare of my myofascial pain syndrome. So is that what this is? The pain is in different places and the tingling is new. Of course I know that my MPS symptoms have changed over the 15 years I’ve had it, but this all feels different. I don’t know why I feel that way, but I do.

Even so, I have no idea what to do now except push through and try to keep my anxiety in check. I am scheduled to go in to see my massage therapist tomorrow to try to get some trigger point work in, with the hopes that it will relieve some of the pain if it is in fact related to my MPS.

The panic attacks don’t feel like a huge setback (a small one, yes), mostly because I knew what was going on and I actually welcomed them with the hopes that just going through it would give me relief on the other side. Almost like if I gave it permission to happen, then I was okay with it happening.

Now…I’m tired. I hope I will sleep. Hub is working from home tomorrow for most of the day, I have the massage therapist, then I’ll be alone for a bit while Hub is visiting a client. Well, the dogs will be with  me and my father is nearby, but I’ll have to take care of the dogs and feed them and stuff on my own. Hopefully I’ll feel up to it.

 

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Who do I do for?

Maybe about a month ago, I said to my father, “What do you think about having the family over for a Memorial Day barbecue?” He agreed, and although I offered to host the dinner at my house, he said it was fine to have it at his house.

I made this suggestion for a couple of reasons.

  1. My aunt and uncle (my mother’s brother and sister-in-law) have been trying to get us to come to gatherings at their house or their daughter’s house since my mother’s passing two months ago. In both cases, I declined, as I was not ready. My father went to the mother’s day gathering, and came back saying it was very difficult for him.
  2. My brother has told me how he wants “the family to stay together” and that he doesn’t want to give up “family get-togethers” even though Mom is gone. (I have so much more to say about this but…enh)
  3. I don’t want my aunt and uncle to become disconnected from my father and/or from the rest of my siblings and me.
  4. I wanted my father to have something to look forward to

I figured this would be very low key, so I didn’t make a big thing of it. I invited my aunt and uncle, my cousins, a friend of my mother’s, and my local siblings. I told people to bring any kind of side dish that they liked to eat, but that we would provide the grilled meats. I didn’t think about anything until I needed to buy the food a few days before, and even then I kept pushing it out of my head.

I thought Memorial Day would be easier because we don’t associate the “holiday” with my mother. In past years, if we ever did anything for Memorial Day, it was an impromptu cook-out at my house mostly because Hub wanted to grill anyway and sometimes my parents and brother would join us. I thought this would make everything easier.

When I went over on Sunday to bring some food ahead of time to my father’s house, I asked him if he wanted help setting up in the dining room, which is where we normally host more than the immediate family. But he wanted to have everyone in the kitchen. We went through a bit of work to make that fit, but he seemed to want to stay away from the formal dining room where we usually have gatherings. I understand, so I didn’t discuss it with him, we just did what we needed to for the kitchen.

There was a snafu with the grill, but we managed to get food grilled and put out on the island for people to serve themselves and then sit at the table together. I felt very disconnected from everyone. I spent most of the two hours disengaged and quiet. No one seemed inclined to hang around after eating.

My aunt–the one who can’t seem to get past her own grief for her mother–put her hand on my shoulder on the way out and said, “It’s a good first step, right?” I wanted to punch her in the throat. Instead I said, “thanks” and turned away.

We cleaned up, then everyone pretty much left. When I thought my father was okay, Hub and I went home. I was a bit annoyed at the “side dishes” that people brought (someone brought a little package of pre-cut fruit, someone else brought a little bowl of cut veggies, and someone brought a bowl of cole slaw), but I really just wanted the evening to be over.

I didn’t want to have this get-together. I didn’t want to be the one arranging it. I didn’t want to be there. I hated the whole thing. I didn’t do any of it for me. If it had been my preference, I would have not had any get together. I’m not ready. I’m not interested. It hurts too much.

My brother, the one who has said how upset he is that the family isn’t getting together? He’s the one who hardly ever spent time with my parents. He’s the one who doesn’t stop by and visit, or instigate any get-togethers. He never hosts anything at his house. He never arranges any family get-togethers. He never even calls to say “we’re heading out to dinner, want to join us?” He says he is going to invite our father out to eat to stay in touch with him, but he hasn’t done it. My brother’s wife saw our mother maybe once in the last difficult two months of her life. She just didn’t care. My brother suffers from major depression. He is being treated for major depression. I want to do what I can to help him. I don’t know how he is helping himself in this arena of staying in touch with the family. I think he is relying on me to do it, and I don’t want to do it. If he wants the family to continue to get together, he’s going to have to participate. Because I’m not going to step into my mother’s shoes and take over. It isn’t me. And I don’t want the things he wants. If he wants those things, he’s going to have to do them.

My father…I don’t know what he wants. I don’t think he ever HAD to do anything with regards to family gatherings, so he just doesn’t do it. If I don’t do it, will the family slow fall away from each other? My father doesn’t want to do anything. He never had to pay bills–my mother did that–so he has no clue what money he has or doesn’t have. He doesn’t know about his the house or car insurance. He doesn’t want to know. My brother–the one who lives with him–is basically doing all the bills. And the grocery shopping. And the cooking.

I basically just spent the last ten minutes sobbing. I’ve cried myself to sleep the last two nights. Today I just feel overwhelmed and completely overemotional and this isn’t even the first time I’ve cried today. Apparently not the last, either. As soon as I catch my breath, I just start again.

I miss my mother so much I can’t even… I just can’t even. Period.

I’m in pain. My body hurts. I saw my massage therapist but it didn’t help and she’s going on maternity leave so I won’t see her for months. I’m not sleeping. The acupuncture isn’t helping. My health anxiety is suffocating me. I haven’t been able to write anything (my books or anything other than the blogs) for years. Since before my mother got sick. I can’t figure out the paperwork for my mother’s bonds.

I feel like … nothing. I don’t want to engage with anyone. I don’t want to do anything. I don’t have the energy to be the person everyone else seems to need me to be. Not right now. Not today.

 

 

 

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Unnoticed and feeling the guilt

I am having a bad day. I am going to whine about it. You are forewarned.

Technically speaking, this is day 2 of the “bad day”. On Monday, I decided for no apparent reason that it was time for a haircut. I don’t like haircuts, they give me anxiety. More specifically, making the appointment and going to the salon (and being IN the salon) gives me anxiety. The haircut is not that big a deal for me anymore…I know it will grow back. I know if it’s a bad cut, I’ll deal with it somehow. It’s just hair. I came to that conclusion when about 8 years ago I cut off 23″ of hair and sent it off to one of the organizations that makes wigs for children with cancer. It was the same way that time…I made the decision, I went, it was over with, I survived it and the ensuing days/months/years with short hair (for the first time in 30 years). Since then, the change from long(ish) hair to shorter hair doesn’t bother me. But having to call to make the appointment…and then survive the appointment, they are anxiety-making.

I am not good at small talk. People think I’m good at it, but I hate it. I spend days before trying to think of things to say and/or talk about. Then I feel like an idiot having the conversation. I don’t know the stylists, I don’t know their lives or their interests…I just feel dumb. In addition to that, I have anxiety over the hair washing station. I hate having my head resting on that thing because it hurts. I’ve heard of instances where people can have strokes from resting against those tubs (true? not true? does it matter to anxiety? nope). I also end up with muscle strain from being stretched to sit with my head on that tub thingy. Sometimes I wash my hair at home and go with wet hair so they don’t have to wash it again. But then I feel like the haircut isn’t as good because they didn’t see my hair ahead of time, dry, to see how it needs to be cut. I also feel judged when I’m sitting in the salon…just because I feel like it’s a frufru place. I feel out of place there.

Okay, so I called and made an appointment with the stylist I saw last time. She does an okay job and isn’t overly talkative. She looks like Pink! I’m just saying, she’s a bombshell. I’m always intimidated by her. But I wanted to get something fun done and she’s the queen of that kind of stuff (her instagram rocks). I found a color I wanted for my hair and brought it with me. She did the color job, cut my hair, then blew it out (without asking). I both love and hate having my hair blown out. I like it because it’s different and I can’t do it at home. I don’t like it because it doesn’t look like me and then I never know how my cut really is with my normal hair. I left the salon (after leaving a rully nice tip because that’s how I have to be) and came home. I wanted my hair to be reddish purple. Yes, I said it. My hair is normally brown. I used to dye it red all the time…oftentimes a very unnatural red because box color is hard, ya’ll. So I came home and I am looking at my hair and it’s reddish. But I see no purple. I had worked myself up to purple-ish hair and it’s just…red. Hub says he sees purplish, I don’t see it. I’m disappointed. I haven’t washed my hair yet so I have no idea if the cut is okay, but even if it isn’t…it just is what it is. And it’s shorter than I expected…as it always is.

So I’m home. And I’m trying to ignore my hair. And I talk to my mother, who only knows I went to get my hair cut. And she’s telling me that my brother (who lives with them) is upset about something he didn’t know about…because he has to know everything. Even when it has nothing to do with him. And I’m one of the people who knew about this…THING that has nothing to do with him. Part of it was my doing. So she asks me to tell him about it and I get mad. I tell him, then I tell him if he has questions he should ask her…which he doesn’t bother to do. He just wanted to be mad and make my mother feel badly. He’s really self-centered and doesn’t think about other people. He’s sure the world should revolve around him. His schedule, his knowledge, his life. It’s very difficult for me because although he’s older than I am, I often feel like I’m taking care of him. I often feel like everyone is catering to him, even though he’s entirely capable of being an adult.

So that was yesterday, and now it’s today. I go over to go with my parents’ to my mother’s lymphedema appointment and I tell my mother than I’m angry with my brother. She takes his side, tells me not to be angry. And I tell her I’m allowed to be angry. Then she tells me she likes the color of the pants she’s wearing. I bought her those pants so she’d have something with larger legs that would cover her lymphedema wraps. I picked out the color for her, I ordered the pants, I did it without asking because I knew it would be helpful. She said she liked the color of the pants but didn’t say thank you to me for taking care of it for her. She didn’t mention one word about my obviously reddish hair. She only told me not to be mad at my brother because “he can’t help it” if he is the way he is (she made him that way because she lets him get away with it) and told me she liked the color of her pants.

I helped her roll her wheelchair into the bathroom so she could go before we left for her appointment, then I sat down in their living room and texted Hub and said, “I feel unnoticed and unappreciated.” He wrote back that he was sorry, that he loved me, and that he liked my hair. I help my mother down the hall in her wheelchair and into the mudroom to get her coat on. We get in the car. There’s no conversation because I don’t initiate conversation. Normally I try to keep Mom occupied, but I didn’t today. We get to her appointment and the therapist starts talking about wrapping Mom’s legs at home. And I’m volunteered. Because my father has no patience. And who else is there? And in my head I’m already thinking of how often I’m going to need to unwrap and rewrap her. What weird hours of the day she’s going to want that done. The therapist tries to train me to wrap my mother’s legs–feet, calves, thighs–so she does one leg and I do one leg. My OCD gets to me, it takes me three times as long to wrap the leg I’m working on versus the therapist (I know, she’s been doing it for 14 years…but it’s my brain hating on me). We finish up and go back to the car. I’m silent on the way home, though I’m texting with another brother about some paperwork we’re trying to finish up for my parents. And we’re talking about the brother who lives with my parents and how frustrated I am.

We get home. I put together all the wraps from the last appointment to take home so I can wash them…because who else is going to? I ask Mom if I can get her anything and she says no. Then she says, “You got your hair cut?” I said yes. That was the end of the conversation. I put my coat on and came home to take care of my dogs and wash the wraps.

I feel like I’m unnoticed and I feel terrible for feeling this way. I wouldn’t be anywhere else. I wouldn’t NOT do the things I’m doing. I wouldn’t not buy the clothes she needs, or try to buy the wheelchair cushion she needs (it’s too hard and it makes my back hurt–not thanks for thinking of it, but can we try finding something different…), or wash the wraps, or go to the appointments or buy the food or supervise the cleaning people or clip her toenails or cut her fingernails or make her soup the way she likes it or  … or… or…

But I’m still a person. I still want to be seen as a person. Their daughter, their sister…not just the person who is doing all the things that no one else is doing. Not the person who had to learn how to read and decipher legalese to figure out their trust paperwork. Not the person who had to figure out how to deal with their bonds, or transferring their accounts into the trust…or how to move all her volunteer work to other volunteers. I’m still me. I’m still part of the family, I’m not just a personal assistant or representative or paid caregiver. I want to be acknowledged, I want to be noticed, I want to be appreciated for the things I’m trying to do to take care of things. No, I want to be noticed and appreciated, period.

I’m tired. I can’t take a break because there’s no one else to do these things. They won’t let me hire someone to help them. And honestly, even if they did, they’d probably want me to be there to supervise them, like with the cleaning people. I’m not able to do as much at my own home as I used to. Laundry falls behind. The dogs get left at home more and more…I don’t see Hub as much. The dishes stack up in the sink or sit in the dishwasher. Things that need to get done are not getting done at all. I feel lost, like I’m losing who I am. And I feel absolutely horrible about feeling that way because I love my parents and I want to do everything I can to help them. I didn’t know this would be so hard. I’m terrified because I know this is only going to get harder as Mom gets sicker. She’s lucid, though she has trouble hearing and remembering things right now. But in truth, this isn’t the mother I remember, even in the last couple of years that she’s been fighting with this. She’s unhappy. She’s moody. She’s short with her temper. She acts like a petulant child. She complains that no one does anything right. I know she’s sick. I know this is incredibly difficult for her. Which is all the more reason why I feel horrible for feeling the way I do.

I try really hard not to be short with her, and I try to do things the way she wants–generally asking specifically what she wants and encouraging her to tell me how she wants it done. She’ll tell me it’s fine, then complain when it isn’t done to her standards or satisfaction. As soon as I walk into the house she starts complaining…about my father, about something that happened or didn’t, about the doctor, the pills, the cleaning people, the phone calls, the crochet, the television…whatever is sitting on her mind. She doesn’t even say hello or ask how I am. She almost always asks about Hub–who we all claim is her favorite child–but she doesn’t often ask about me. That’s another reason why I feel like I’m invisible. If I limp because of my plantar fasciitis, she might see it and say “why are you walking like that” but that’ll be it. Most times she won’t even notice.

I know that’s my mother still in there. I don’t think she knows that I’m still in here.

 

 

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I’m cheating on my therapist (part 2)

You might want to read part 1 first. It’s kinda long…

Session number four (at least of the “active” sessions) started out with V talking to me about being bullied again. But this time, it was my grandmother that we were discussing. During my very first conversation with V, we were talking about those “resource” people and V was asking me about extended family like aunts, uncles, grandparents, etc. I told her that I loved my grandmother very much, and that she was a big part of our lives growing up and into my adulthood. But that I had some mixed feelings about her, because she was always harping on my weight.

And like some weird television show, I had one of those epiphany moments. I realized very clearly how abusive my grandmother had been to me all my growing up years. How much she had damaged me, hurt me, bullied me, abused me. There was no physical abuse. She loved me. But she hurt me so much.

She compared me to people around us, other girls, other women. She told me I’d never be happy if I didn’t lose weight. She told me that I wouldn’t get a husband if I didn’t lose weight. She took me to her aerobics class as often as she could (very often in the summer when I was out of school), where I was forced into working out with other women of all shapes and sizes. Then she pointed out how I couldn’t keep up with this woman or that woman. She compared me to her (younger) friend’s daughter, a girl who was two years ahead of me in school. Pointed out how slender and in-shape that girl was, how smart she was, how happy she was.

She watched what I ate when we were together. She pointed out what I shouldn’t be eating. She encouraged me to deprive myself, and to eat only the things she gave me. She chastised me when I ate too much, or pointed me away from the cookies or the cake that she had baked for others in the family.

I was the only girl in my family, the youngest of four. I was also the only one of the kids who was overweight. I snuck food because I felt deprived of the food. Oh don’t get me wrong, my mother was watching me, because she, too, was unhappy that I was overweight. But she was more subtle about what she did and said. And she didn’t do the overt comparisons that my grandmother employed.

I went to fat camp, subsidized by my grandparents, because I know my parents couldn’t have afforded it at that time. It was a spectacular failure. I might have lost five or ten pounds at the time–the diet was very restricted and the activities were very forced on us–and I gained it all back very quickly…and then some, I’m sure. And my grandmother pointed it out, reminded me how hard I worked at the camp, and how I was letting it all go to waste.

I loved my grandmother very much. She loved me. She had her own weight issues, her own body image issues…I know this affected her and how she treated me. I know it affected her and affected my mother as well. That doesn’t mean what she did to me all those years wasn’t painful and damaging. As an adult, I understand where it came from for her. I’m working hard to separate her as the woman who loved me from her terrible behaviors toward me. I’m trying to remember that I’m NOT damaged. I am whole and I am okay.

My grandmother is only part of the reason that I never feel like I’m enough. Good enough. A good enough daughter. A good enough sister. A good enough wife. A good enough friend. I work ultra-hard, go the extra mile, do all the little things and the big things…and yet even when people are appreciative, I worry that it wasn’t enough. That I wasn’t enough.

My mother had three boys. All she wanted at that point was a little girl. A daughter, who she could dress in lace and ruffles, who would wear sweet pink dresses and play with baby dolls, who would love her tiny tea set and be the epitome of every dainty little girl. I was none of that. I hate lace and ruffles–they made me itch–and I wasn’t overly fond of pink. I hated dresses. I never once picked up a baby doll and I totally ignored the expensive and lovely tea set that I’m told my uncle bought for me at my mother’s urging. I played with the boys’ toys, with the boys themselves as often as I could work my way into their play-time, and I wore pants and tee shirts. And I was far from the dainty little girl she had hoped for. Very very often, my mother would speak of me, and then tell people all those things…I waited so long for a baby girl, I wanted to dress her in lace and ruffles, I wanted to see her play with baby dolls and tea sets. She never wanted any of those things… Over and over my mother would tell people of my failures. My mother loves me and I love her. If you read any of my blog posts, you can’t miss that. We’re amazing friends. I’m in awe of her. I’m deathly afraid of the day I will lose her. AND she made me feel like I wasn’t enough while I was growing up. I wasn’t who she had expected me to be.

I try so hard to be enough. I’ve been bullied and abused and put down for who I was. I only ever wanted to be loved.

As we were talking about my grandmother–and in part about my mom–V asked me to picture myself as a child. I could immediately remember my little bedroom. The walls were painted a pepto bismal pink, my white iron daybed mattress covered in strawberry shortcake sheets (which were in part pink), the white dressers and desk that had once belonged to my mother, the deep cranberry wool carpeting that my grandparents had passed down to me from a previous house. The full length mirror on the back of my door. The tiny little black and white television on my dresser, under the shelves that held the dolls my grandparents brought for me from every trip they took out of the country (I had never asked for dolls, they just bought them for me). The window air conditioner an uncle gave us for my bedroom. V asked me what that little girl was thinking, and I blurted out she just wants to be loved….she doesn’t want to be alone.

In previous sessions with T, I didn’t really understand talking to the little girl that I used to be. I’m not sure why this time it was more accessible. Maybe because of the revelations I had about my grandmother and my mother. The thing is, I don’t know how to make it better for that little girl. I was alone. I felt unloved. I’m not alone as an adult. I have a wonderful relationship with my mother, I have a good relationship with my father and my brothers. My husband loves me very much. I have a very good friend whom I’ve known since second grade. And yet I still feel not good enough. I just want to feel good enough.

I don’t know what’s going to come next. I was supposed to see V again next week but I’ve canceled the appointment due to my mother’s health. That doesn’t mean I’m not thinking about all of this when I have free brain time, but I’ve been pretty occupied with my mother’s appointments, her care, and taking care of her personal and business issues. I have another appointment scheduled with V in a couple of weeks. If I can manage the appointment, I will. In the meantime, I’m still seeing T, so maybe I’ll be able to address some of these thoughts with her. We’ll have to see how it goes, considering everything else happening at the moment.

 

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Picture this…

Oh yes, well, um, sorry, but no can do.

Ask me to picture something in my mind and my creative brain will give the a description of the “picture” to the smallest detail you require, but I cannot actually picture what was described. I can’t bring up an image if I close my eyes. I do not see a photo, a television or movie screen, art on a canvas, my husband’s face, my beloved deceased Sweet Pea…

Ask me to describe any of those things and I can (and will). Ask me where something is in my house and I can tell you, down to what close, what shelf, which side of the shelf, behind what other object. I can…but I can’t bring up an image of that item. I’m broken that way, and I don’t know why.

The reason behind this weird rant is that I get to fly (woo hoo–not) in September to my niece’s wedding. I haven’t flown in more than 25 years. Prior to that, I flew several times…mostly on full size airplanes, but twice in a small six-seater plan (flown by my aunt and uncle). Not one of the flights I’ve been on has been uneventful. I’ve had really bad take-offs, really bad turbulence, really bad landings. One flight had turbulence the entire flight. Another flight, we were landing in a storm and the 747 we were on–full size plane–actually tipped sideways as we were descending to the runway. The flight with my aunt and uncle, the landing was so windy that not only did the plane sway violently as we tried to descend, but my two younger cousins who were sitting across from us, facing us, were throwing up as we tried to land. And they flew almost every weekend with their parents (my aunt and uncle–the pilots).

I don’t like to fly. I’m not a good flyer. I will pretty much drive almost anywhere rather than fly. But driving to my niece’s wedding did not seem to be prudent, in that the drive would be 12-14 hours long, for a four hour wedding. And the wedding is on a Sunday afternoon, so getting home would take us into the work week, which was going to be a problem for Hub. In addition, if I drove, my parents were going to want to drive with us…and my father is not a good driver anymore. It’s sad to say, but true. He has some physical issues that wouldn’t be good on a 12 hour trip, and he’s not one to let others drive even though we’re all perfectly able. Plus, his reaction time isn’t so good anymore. And no matter how I tried to work it, I couldn’t talk my way out of attending the wedding (I’m not particularly close to my niece as my brother and his family have lived that distance away from us for most of her growing up years and they rarely visit).

So to that end, we have to fly to the wedding. Hub and I are flying into the destination Sunday morning and flying home Sunday night. We’ve made this decision because of Butthead, who had her crutiate ligament surgery less than four weeks ago. She’ll still be in “recovery” when we need to be at the wedding, so we don’t want to leave her for too long. We’re fortunate that a very good friend of mine is going to come stay with the dogs while we’re gone for the day…and I trust her with our dogs. Before we go and after we get back, we’ll be watching my parents’ dog, too. But she can’t be with Butthead in a normal fashion because Butthead can’t play yet (see crutiate ligament recovery), so we have to restrict their together time and it has to be very supervised.

I was trying to find ways to make flying an easier experience for me. Initially, T suggested hypnotherapy, and I tried to get appointments with local hypnotherapists, but one was booked for a year (a YEAR), and the other could only fit me in with two appointments before the flight, one of which was barely three days before the flight, so I cancelled those. I tried a third hypnotherapist, but she was traveling in August and September and wouldn’t be able to fit me in before the flight. I was hoping to try other options, one of which was a guided meditation someone made for me to reduce my flying anxiety. Although it was a nice meditation, it included bringing up a picture of a plane in my mind and replacing it with a picture of something nice. But I realized at that point, I wasn’t able to bring up either image.

So I turned to youtube hoping to find some videos on hypnotherapy and/or relaxation techniques for flying. But once again, they were all trying to get me to PICTURE things in mind. Picture things to relax, picture things to move into a hypnotic state. I can’t do those things, and I was stressing out so much over it that I was in tears. Hub told me there must be another way to relax or move into a hypnotic state without picturing things, but I couldn’t find anything. Everyone wants you to picture good things, or picture a staircase, or picture your loved one…a beautiful meadow, a waterfall… and I can’t. It’s so frustrating it really pushed me over it tears. It’s the first time I’ve cried since my second surgery. And it wasn’t hormonal, it was just pure frustration and distress. And it sucks.

I don’t know what’s going to happen. I hope I’m going to be able to get through the flight(s) easily. I’m not thinking about the anxiety of the flight, I’m more thinking about how annoying the trip is going to be. I’ve never been through today’s security measures at an airport (again, haven’t flown since 1989) or had to think about getting patted down or going through an xray machine. Or the size of our carry-on bags. Or how big and busy the airports will be, or the parking… I’m bringing my crochet and a book, and my iPod. I hope I’ll be able to distract myself enough to not be miserable the whole flight.

 

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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 many 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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This body

Last night I was not able to fall asleep, so I started working on my thankfulness list. I don’t do it every night anymore, but I still do it when I need the reminder. Or when I need the distraction. Last night was probably both.

One of the things I decided I was thankful for last night was my body.

This body. The one I’m in right now. The only one I have. The one I claim has rebelled against me for years. That has failed me. Yes, that body.

This body, that is too round, too fleshy, too fat. Too dimply. Too hairy.
This body that requires effort to haul around, with muscles that are too tight, joints that that are too painful.
This body that has acne and scars and rosacea.
This body that has allergies and vertigo, migraines and imbalance.
This body with feet that are too big, ankles that are too chunky, thighs that are too wide. Hips that are too wide. Shoulders that are too wide. Butt that is too big.
This body that has hair that is too coarse, too wavy to be straight, too straight to be curly.
This body that has fingernails with ridges, that split long-wise when you sneeze.
This body that has one patch of skin on one hand that itches unbearably but looks completely normal.
This body that has skin on both hands that are dry and crack and bleed all year ’round, that make people ask me what’s wrong with me.
This body that has one eye that doesn’t move right, so that I can’t see to my left without turning my head.
This body that has saggy arms and saggy jowls.
This body that has a stomach that is too big and sticks out to the front like I’m pregnant, but is narrower on my sides than my hips which means I can never find jeans that fit.
This body that has breasts that sag. That don’t fit into bras properly. That need to have extra padding (that I don’t freaking need) to hide my nipples.
This body that has rolls and creases.
This body that has sebaceous cysts. Sometimes in bad places. Sometimes in REALLY bad places.
This body that has trigger points and muscle spasms.
This body that has tinnitus and ears (and cheeks) that burn and turn red-purple from being flushed for no reason (and/or because of allergies).
This body that has stomach issues. Constipation. Diarrhea, bloating, gas. A bladder that keeps me awake at night after drinking less than 4 ounces of water. Or no water at all. (WTF)
This body that doesn’t allow me to sleep. Or get rest. Or feel refreshed. Or find relaxation.
This body that houses my anxiety and my depression.

This body that allows me to help take care of my parents. My husband. My brothers. My aunts and uncles. My dogs. My friends.
This body that makes soup for my mom that is the only thing she can eat the Monday, Tuesday, and sometimes Wednesday that follows her infusions. That makes ice cream which still tastes good to her even when the chemo messes with her taste buds.
This body that carries me through the day so I can crochet chemo hats for patients who need them.
This body that moves me from place to place. That gives me the ability to raise money for charities that are important to me…charities that bring help and healing to many people.
This body that permitted me to write books that touched other peoples lives.
This body that houses my brain. And my heart. And my soul.

I want to love this body, I really do. I want to ignore all the first list and concentrate on the second smaller list…I’m trying. Some days it’s not so bad. Last night when I was trying to remember to be thankful for this body of mine…in the dark of night when I’m trying to ignore how loud and fast my heart rate feels/sounds, saying how I am appreciative for this body of mine felt worthwhile and important. Today, when I’m standing in front of the mirror and I see my naked body, it’s only the first list that crowds my mind.

Without this body–MY BODY–I am nothing. I need to remember that. I need to love my body no matter its form. BECAUSE of its function.

 

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